Date:    27 December 1999
From:   Sherman Perera  sherman1@one.net.au

Hi Everyone,
It has been 5 months since the birth of our son Dylan who was born with Bilateral Talipes.   We have coped pretty well so far. The only gripes I have with his condition is that I have to give him stretching exercises. This has caused his left foot to go a bit bluish in color. So at our next appointment at Monash Medical Center I asked the surgeon about this. He then said that it needs to be done.  My wife and I have different opinions when it comes to the exercise's.  She seems to think that I am torturing him. However I am only doing this the way the doctor has said and shown both of us to do.  I was wondering if there is anyone out there that has had the same experience.
Sherman Perera

Hi Sherman
I do not feel confident at all in offering you any advice about stretching exercises.   My wife and I found it very difficult with our Phoebe and we did not continue it for very long.  I am going to put your email on the TIPS website and hope that there is someone who has had a similar experience and can offer you some feedback.
Tom Clark

Date:    26 December 1999
From:   Yvonne Dutton   yvonnedutton@bigpond.com.au

Hello, and thank you for your web page.  I am a mum of a beautiful 11 year old boy who was born with a club foot.  I can not describe the relief I felt when I located T.I.P.S I honestly cried.  For so long I thought we were the only parents (even though the Doctors kept informing us that it was a common deformity) who experienced the diagnosis, castings, surgery and subsequent hospital visits.  At last others who may have found buying shoes so difficult especiallly from uncaring shoe stores who refuse to sell split sizes.  I gave up asking when my son, Brandon, told me he, " hated his foot".  We buy regular sized shoes now, even though the right one is two sizes too big.  The Royal Children's Hospital (Melbourne) suggests another operation, Brandon is unwilling and we are unsure.  We would like to become members of T.I.P.S.  Please advise us on how to go about it.  Once again, I cannot thankyou enough, We were told of Brandon's deformity when I was 6 months pregnant with him and have felt so aloan since then - until now.
Yvonne Dutton

Hi Yvonne
I have been offline over the Christmas-New Year period and your email was the first that I read this morning.  I was delighted to hear your response to finding the TIPS site.
I am sending a copy of this email to Angela who distributes our newsletters and subscription forms for membership to TIPS.
By the way, there are shoe stores in Australia that will split shoes.  I know for sure that Speeds will split shoes and there probably are some others.
I grew up with one foot several sizes smaller and only being able to buy regular shoes, so I do understand how frustrating it is for Brandon and for you.
I do hope that you are able to do more for Brandon and improve the condition of his foot.
Tom Clark

Date:    24 December 1999
From:   Rebecca Welsh <raz@hotlinks.net.au>

My name is Rebecca and I am the mother of a nearly 18 wk old boy named Zack.  He was also born at the Angliss on the 17 Aug this year.  Yes you guessed it.  Club foot.  I didn't find out during my pregnancy about the club foot which I am so grateful for.  I know that if I had have known I would have been most upset regarding the situation and as there is nothing that can be done until the child is born, if it was to happen in a subsequent pregnancy I still wouldn't want to know.  It was interesting to note that your orthopaedic surgeon visited you on day two.  My son was born with quite a degree of club to his feet.  My delivering doctor suggested at first that it may not correct it's self and that it would need to be attended to by an orthopaedic surgeon.  The paediatrician and physio's however encouraged me to do physio on the feet and indicated that it would most probably correct his feet.  They said that his feet would be re assessed at his six week post natal check and that if my doctor felt that there was not enough improvement then a referral would be given to an orthopaedic surgeon.    In retrospect I am not angry at the misguided advice, however it wasn't until my six week check up that I was given that referral and my son was 8 weeks before he was seen by the wonderful doctors at the Royal Childrens hospital.  I am just curious as to who put you onto an orthopaedic surgeon.  Many discussions with the doctors at the Childrens reveals that many hospitals still don't seem aware of the need to refere babies with club feet even if it may be corrected with physio as a matter of precaution.   Fortunately the delay in my son's treatment has posed any serious problems and I have been able to pass this information on.  I can say this regarding my son's feet.   I believe that there is a certain allocation of babies who have to be born with club foot.  God gave me Zack because he knew I would deal with the situation and take it in my stride giving him the best care possible.  Zack however chose his feet.   Just the first in the many obstacles he will overcome to achieve outstanding results in his life.  You only have to watch Forest Gump to know that.  Like his mamma said, life is like a box of chocolates, you never know what you are going to get.  
kind regards
Rebecca Welsh

Hi Rebecca
My wife and I think that the Angliss is a wonderful hospital. We live in the Dandenongs and we have been very always happy with our experienceds at the Angliss especially with with the births of our 2 girls.
We first became aware of the possibility of club feet during an ultrasound at 14 weeks and since I was born with club feet we were suspicious and looked particularly for club feet during the 20 week ultrasound.  We then asked our GP for advice and he recommended an orthopaedic surgeon who in turn referred us to the head paediatric orthopaedic surgeon at Monash Medical Centre. We did not learn very much about talipes at these  2 orthopaedic visits however we were assured that our surgeon, Mr John Griffiths, was quite happy to come to the Angliss a day or two after the birth. He actually came on a Sunday morning.
We were quite happy to have several months of the pregnancy to get used to the idea of a talipes baby so that at the birth we were not particularly concerned about her feet.
I must say that I like your attitude about Zack overcoming obstacles to achieve outstanding results in his life. I wish you all the very best in giving him the skills and motivation to do just that!
Merry Christmas and I hope you have much success with Zack's feet next year.
Tom Clark

Date:    23 December 1999
From:   iandjelectrical <iandjelectrical.1@hotlinks.net.au>

hello,
My son was born with talipes affecting his right foot in October 1998. He began with casting and then had surgery in April 1999. He then moved to night splints in July 1999. During this time I noticed his foot seemed to be returning to its original position. His orthapedic surgeon confirmed our fears and in October 1999 he went back into plaster casts that were changed weekly. After six weeks of this his foot seemed a lot better and he was put back into night splints only. However, it has become quite obvious that his foot is again beginning to turn in. Our next appointment is in three months so as to allow him time to walk (he is now 14 months and can pull himself up). My question is whether or not walking will help to stop and/or correct his foot. The surgeon has discussed the possibility of another operation and will make that decision in March 2000, but I am hopeful that when he starts walking it will rectify the turn in his foot.
Thanking you
Joanne.

Hi Joanne
I understand that the walking helps with the correction.  It builds up the muscles and tendons so that whatever correction has been achieved it will support that correction.   I have not heard anything to suggest that walking can rectify the turn in the feet.
I do hope all goes well with your son's correction and I also hope that walking does help.
Tom Clark

Date:    21 December 1999
From:   "GETXO GETXO" <getxooxteg@hotmail.com>

Hello there,
I have read numerous articles on the subject.  Whilst the information of treatment and the emotional response after learning about the loved one's condition is common, there is no real mention as to whether the child will go through similar circumstances when he/she, as an adult, has children.  I was wondering whether there is a genetic link with a person with talipes which causes their child to be deformed as well.
Hope to hear from you
Dan

Hi Dan
I was born with talipes and I have a daughter, Phoebe, born with talipes and I do believe that there is a genetic link.  I do suspect that some cases of talipes are due to crammed positioning in the uterus but I believe the more severe cases are caused by genetic defects.  Talipes is more common in children who have a parent born with talipes (3:100) whereas talipes normally occurs quitely rarely (1:1000).
I hope that helps.
Tom Clark

Date:    17 December 1999
From:   "Keel, Philip (ELSLON)" <philip.keel@biomednet.com>

Hello Tips,
I would greatly appreciate it if you could answer a couple of questions for me:
1) I had talipes in both feet at birth and with corrective surgery, i now live a normal life with little problems from my feet. What is the probability if I have children that I will pass it down to them.
2) Also because of the extensive surgery i had, is it possible that i may have artheritis later in life (i am now 26 years of age).
Regards
Philip Keel
Project Manager New Media
BioMedNet Ltd
Elsevier London

Hi Philip
Talipes is more common in children whose parents have had talipes however the likelihood is still fairly small, about 3:100 whereas talipes normally occurs at the rate 1:1000
I have heard nothing about arthritis associated with talipes.  I am 50 and I have no sign of arthritis in my right foot which was severely deformed at birth.  You may be interested in contacting Sandy Kelly <Sandykpdg@aol.com> who is planning to develop a website for adults with club feet.  She may have gathered some evidence of arthritis in older clubfooters.
Tom Clark

Date:    15 December 1999
From:   "Leo Delgado" <LALI@msn.com.au>

It has been six months since we last wrote with regards to Mikaila's progress. In the last six months she has improved out of site. She is now walking, running and doing every other thing that a normal 19 month old is doing - including those vicious tantrums!.
Mikaila began to walk un aided at 17 months and her muscle tone and balance has improved out of site since that date. She currently still wears her boot & bar to bed and an AFO for her right foot during the day. If you recall from my last e-mail, Mikaila's right foot was slightly over corrected after her surgery. The AFO is applied to help her re-position her foot to the correct position when she walks. The results so far have been excellent. Our Ortho. also gave as a very happy Xmas present in advising that Mikaila will not require boots & bar at night as of Christmas eve. Her feet have maintained excellent positioning and flexibility since her surgery 15 months ago. The signs at the moment is that it is highly unlikely that they will turn back in again. We are crossing our fingers and praying that this be the case.
Meanwhile, our battle continues in looking for ways of improving Mikaila's progress. Although we are still not "out of the woods" , I would recommend to parents who are now travelling the same path we took 19 months ago - to PERSIST and always strive at looking for new options on how to best treat their kids. I was very apprehensive with regards to the boots & bar and AFO's at the start, but looking back now I recognise that they have achieved a world of good for our daughter.
I congratulate you again on the great work that you have produced with the site. Via this medium you have helped parents come to terms with Talipes and it's treatment.Wishing you all a Merry Christmas and praying that less and less of our little ones are born with this condition.
Leo, Leanne & Mikaila

Thanks Leo and Leanne for your update on Mikaila. She will have a very good Christmas present when she is no longer wearing the boots & bar.   It is really such a relief for everyone!  You are so fortunate that Mikaila's feet have maintained excellent positioning and flexibilityand I hope she continues to improve.
Did you read the emails regarding a proposed gathering in Sydney for 'talipes' families.   I do hope it goes ahead. Send an email to Melody or Garry and Kylie if you are interested.
All the very best to you at Christmas and our prayers and wishes that you have a safe and prosperous new year.
Tom

Date:    2 December 1999
From:   Peter Harding  <peterharding@yahoo.com>

Hi,
My baby girl was born with bi-lateral talipes. When she was born she had regular physio and strapping. As the weeks went by, everyone was pleased with her progress and eventually the straps came off, and just physio was required. She was seen by an orthopedic surgeon a few times and he advised that surgery was "unlikely" due to her good progress. The child physio department has since discharged her because of the correction on her feet being so good. She still pulled them back into the wrong position, but when relaxed, they looked quite normal, there was nothing physical stopping her feet from going back into correct position.
She is now just 9 months old and has started to crawl and push her self up into a standing position when leaning against something. I am really concerned that she doesn't want to put her right foot in the normal position and she stands on the side of this foot and pulls it in. I try and put the foot in the normal position, but she really battles against this and pulls her foot in the wrong direction.
It is frustrating that, when relaxed, the foot seems to go back to the normal position, but when she tries to move it, she nearly always pulls it in and on it's side.
My wife and I are really worried that she might require surgery. In your experience, is it likely that Daisy (our baby girl) will "learn" to use other muscles and pull her feet in the correct direction?
Many thanks,
Peter Harding.

Hi Peter
For the less severe cases of talipes it is indeed possible for the feet to grow into the 'correct direction'.  When she is walking alot you will probably see much improvement.  You are very fortunate that Daisy has not required surgery before 9 months and it is fairly likely that your doctor will wait a few years to see if the feet correct themselves. 

Could I please be put onto your mailing list.  My daughter was born talipes, to my shock horror, and I would like to be incontact with other parents/groups to expand my knowledge on the condition and to find our about available services.
thankyou.
Michelina Del Giudice
Senior Research Technical Officer
Late Stage Innovation

Hi Michelina
I will be forwarding your email to Angela who distributes the TIPS newsletters and she will be able to contact you by phone or email to get your address and post you some recent newsletters.  If you are living in Melbourne you will certainly be able to meet up with other parents of talipes children.  There is also a gathering being planned for Sydney hopefully early in the new year.
Tom Clark

Date:   28 November 1999
From:   "Andy and Toni Renalson" <the.galaxy@paradise.net.nz>

Hi Tom
I have turned Toni's doc about Heath into an HTML page for you (you already have the first part of his story online)
It would be great to see what I've attached added to what's there already, and maybe you could put the wee picture with his name at the top at the beginning of his story (you'll see what I mean)
Cheers,
Andy
PS. We'll send more as time goes on.

Thanks Andy and Toni, you have made it very easy for me.  I have added Part 2 of Heath's Story to the TIPS website.  Feel free to add to it and enhance whenever you wish.
It must have been very difficult and frustrating to cope with the recurring infections.   However I was very pleased to read how quickly Heath recovered after the surgery and how well the pain was managed.  I am now breathing a sigh of relief that we did not have any infections whatsoerver with Phoebe's pins especially after realising they are the "portal of entry of infection to the bones".
Heath's casts would be off by now and no doubt you would be enjoying the feel of his feet.   I do hope that they look nice and straight!
All the very best, Tom

Date:   27 November 1999
From:   Melody   lordwhybro@mail.one.net.au

Dear Garry & Kylie,
I just read your email on the TIPS website and as Tom suggested we could get a gathering happening in Sydney. I'd be interested in helping organise it and I suppose the first thing to do would be to find out who is interested and whereabouts in Sydney they are so we can choose a central location. Tom, if you want to put this letter on the website you could ask people in Sydney to email me at lordwhybro@mail.one.net.au and let me know if they are interested and what part of Sydney they're in.
I think sometime early in the new year would be good. We'd certainly be happy to bring Max along and show parents of younger babies how fit and healthy he is, and also the results of his two lots of surgery. Depending on the amount of interest we could look at doing it more regularly and taking it from there.
Garry and Kylie, let me know what you think. I hope Stephanie is doing well.
Melody

Hi Melody
I am very pleased to hear that you are planning a gathering in Sydney.  About every second year I visit family in Sydney so I would hope to join in on some occasion.   However I will not be in Sydney over this Christmas/New Year period.  There have probably been about 10 or 12 families in Sydney who have emailed TIPS over the last few years.  We also have quite a number of families in Sydney on our Newsletter mailing list.  I will contact Angela who distributes the newsletters and ask her to send you the names and addresses. I will also arrange to have the idea of a Sydney gathering mentioned in the next newsletter.
I do hope this does get off the ground.
Tom

Date:   25 November 1999
From:   Mike and Denise Thomas < zulut@iafrica.co.za>

Dear Tom and Beata,
I must apologise for not keeping you up to date with Cameron’s Story. We have been through quite a trying time recently, having to sell a family business and also changing employment. We are now living in Johannesburg.
Cameron’s progress has been phenomenal since we last wrote. He was supposed to visit his specialist in December, but he was outgrowing his AFO’s. We decided to visit the doctor at the end of this last October. The visit was on a Thursday and the previous Wednesday evening, Denise and I were contemplating the change into the Dennis Browne boots.
Needless to say, on the Thursday we visited the Specialist. He was very impressed with Cameron’s progress and suggested that we let Cameron walk without any AFO’s or Dennis Brown boots at all. This was the most fantastic news to date. The Doctor would like to see Cameron at 6-month intervals. His feet are looking fantastic with the left foot slightly tighter than the other. He has a tiny scar all the way around the heel of both feet, which is fading fast.
Cameron is 14 months old now and is walking very well. It is simply amazing how Cameron has progressed in such a short space of time. We were so fortunate to have such a professional and brilliant specialist. He was visibly pleased with what he saw in Cameron. We shall have no hesitation in recommending him to whoever wishes to consult with him.
We are now positive about Cameron’s progress and live in the hope that his feet remain in the correct position.
We wish you all a happy Christmas and a prosperous 2000. We hope Phoebe is doing well.
Regards
Mike, Denise, Matthew and Cameron Thomas

Dear Mike and Denise
You really do have good news.  I know just how exciting it must be see Cameron walking.  The progress up till now has been remarkable.  You will probably see even more  improvement as he grows in confidence with his walking. 
Phoebe's feet are very good and she walks well and runs alot now although her running is a little awkward.  I am always looking and hoping to see some more improvement but I know it is now a case of allowing her bones and muscles to grow and mature and give more support to keeping her feet and legs straight.  For us it will be very slow improvement over perhaps 5 or 6 years.
I wish you and all your family a very happy Christmas as well and all the very best for 2000.
Tom

Date:   23 November 1999
From:   Sandy Kelly <Sandykpdg@aol.com>

Hello,
I am a 34 year mom (3 girls - none affected) with bi-lateral clubfoot.  I have looked through your site and you have a lot of great information and testimonials.  I am not having much luck at finding support groups for adults with clubfoot.  So, I am going to be developing a website.  Any information you could help me with would be greatly appreciated!  Especially, how you got started.  I'm not much of a computer person---any ideas? Right now I'm in the brainstorming phase and collecting data.
Thank you,
Sandy Kelly
State of Missouri, USA

Hi Sandy
I am pleased to hear that you are going to develop a web site for adults with clubfoot.   I would be happy to contribute something of my own story.  I have said very little indeed on the TIPS website about what it was like for me to grow up with one club foot.
Anyway you would like to know how I got started with this website.  TIPS already existed as a small organisation in Melbourne Australia, having monthly social gatherings and a monthly newsletter.  I am a computer person and at the time of Phoebe's birth I searched the Internet for information about clubfeet and found very little indeed.   So I decided to copy onto the Net what TIPS was doing for about a hundred families mainly through normal mail.  This was in fact my first attempt at creating web pages and even now it is still a very basic design.  I am happy to keep it as it is for the moment.  When I can afford time to give to this website I prefer to concentrate on the content, especially the emails rather than on a slick presentation.  The email correspondence was slow at first, about 6 emails in the first year!  Judging by the emails we get now I do feel that the TIPS website is really helping many parents with clubfoot children. 
There have been about 4 or 5 people who have emailed TIPS who were adult clubfooters.   They were writing about problems they were experiencing especially back problems.   So it would be good to provide information on your website about strategies to cope with problems stemming from clubfoot.
Please keep us informed of your progress in developing your website.
Tom Clark

Date:   23 November 1999
From:   Wendy Drummond <drummondclan@flexi.net.au>

Dear Tom,
I am writing to send you Keara's update on her feet.  We went back to see the specialist yesterday and he is quite happy with her progress.  It has been six months since we went and during that time she has only worn night splints.
He, the specialist, said she is quite good position wise, for a very bad case of Talipes, and walks on the sole's of her feet quite well.  Keara is in-toeing and this is caused by the bone in her lower leg being twisted.  At this stage he doesn't want to go in and operate, rather wait until she is 6, 7 or 8 years old and see if she grows out of it as some kids do.
Our big news is NO MORE NIGHT SPLINTS.  Keara was so excited when I told her she didn't have to wear her splints to bed she said "I can sleep in my feet".   Aren't they funny with the things they say?
We don't have to go back for another 6 months, unless we feel there is a problem.   All this spare time not having a 4 hour drive and waiting, waiting, waiting to be seen, what will we do?
Our little boy, Tyler, is just starting to walk by himself at 13 months.  I guess it wont be long before he is up and running now.  He has been slower than Keara in the sense that once she got going she just went and didn't crawl anymore where as Tyler still crawls most of the time but is walking a little more.
I still read the e-mail that is sent to you to see what is happening with other families with these special kids.  Keep up the great work you are doing.
Bye for now   Wendy Drummond. 

Hi Wendy
I remember very well the great excitement in our household when Phoebe had no more splints.  That was about 12 months ago and she is 10 months older that Keara.   Just like with Keara we are waiting to see if Phoebe's hips and lower legs will straighten more as she grows older. It really seems such a long time to wait until 6, 7 or 8.
Thank you for keeping us updated on our "cover' girl.  I do like the photos of Keara and Phoebe on the TIPS home page showing very clearly the shape of club feet at birth.
Thanks also for your continued interest in reading about our special kids.
Tom

Date:   22 November 1999
From:   Martin Egbert <martinegbert@earthlink.net>

Dear Tom,
Just writing to say that it appears that there are now 2 Pediatric Orthopedic surgeons in Australia and New Zealand who have been trained in the use of the Ponseti "Non-Surgical" method of manipulation and casting of children with clubfoot.   Although this method is not currently the prevailing method of casting, with it Doctors are able to correctly position clubfeet in about 95% of children without needing to do ankle ligament and joint surgery.  More information can be found about this method by looking at Dr. Ponseti's web site at the University of Iowa, USA at http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Clubfeet.html    On this web site is an explanation of the method for parents and for doctors as well as testimonials from parents and a downloadable video of the procedure in the treatment of a now 43 year old patient.   There have also been 4 long term outcome studies done on patients using this method about every 10 years since 1963.
The 2 doctors are Dr Haemish Crawford in Auckland, New Zealand for whom information can be found in an e-mail I sent to you that is on TIPS under the date of September 13, 99 and Dr. Micheal Bellemore who is at the Childrens Hospital Centre at Westmead, New South Wales.  His phone number is (02) 9893-7394.  I had also mentioned some discussion of this method on a parents support web site in the US which is located at http://boards.parentsplace.com/messages/get/ppclubfoot10/7.html   Since last June 99 there have been about 13 parents from this US web site who have had their children treated using the Ponseti "non-surgical" method.   Photo's of our childs feet at birth, in non-ponseti method and ponseti method casts and after treatment are found on your TIPS site under the date of June 24, 1999
I would encourage any parent trying to decide a course of treatment for their child to learn about and consider this method.  Thank you for your site.
Martin and Allyson Egbert and Joshua (3-17-99)

Dear Martin and Allyson
Thanks again for keeping us updated on the Ponseti method.  I have taken some time to browse through the links you have included in your email.  I am impressed and I am particularly happy to know that there is a doctor in Australia who is practising this method.  I wholeheartedly agree with your last statement that parents new to clubfeet should definitely learn about this technique and consider it as an alternative to any surgery that has been advised by their doctor.  I am keen to discuss this with our orthopaedic surgeon when we see him next February.  Meantime I will be doing more reading from the pages about the Ponseti method.  Thanks again.
Tom

Date:   19 November 1999
From:   Aleem Arshad Niazi   <aan62@yahoo.com>

Dear Tom
With hope that all is OK there. We are also fine here. Fatima is doing well but not as much as expected. Some improvements there are like little bit crawling, moving in walker but she still cannot stand. Now she is in her thirteen months. That worries us a little. But as I have read stories at TIPS, children may take 20 to 22 months for walking, it encourages us a lot. She wears DB Splints at night but no special shoes in the day as advised by the doctor. Apparently the feet have again tendency to move inwards and the doctor has told us she may have another operation after some time. What you think? How many surgeries normally take in straightening the feet? We were very hopeful after first operation that it was an excellent surgery. But as the time passed it looks we miscalculated. We all pray the God Almighty that all will be right for our beloved Fatima in the coming future. Pay our best wishes to your family.
Aleem and Tahmina

Dear Aleem and Tahmina
Thanks for keeping us updated on Fatima.  I think is is good that Fatima takes as long as she needs to get the strength in her legs to start walking.  Many children who have never had any problems with their feet can take upto 22 months.  So you have nothing to worry about her not walking, just enjoy her crawling about.
Our Phoebe also had the DB splints at night.  It took Phoebe a few weeks to get used to them but after that she was fine.  I hope they make a difference for Fatima's feet.  They may help to slow down the tendency for her feet to turn back again.
Just like you we are always hoping and praying that Phoebe will not need another operation.
I try to enjoy all the moments I can get with my 2 girls and not dwell on any of their problems.
Take care of your 2 precious children.
Tom

Date:   14 November 1999
From:   Becky Cresto <Badcratr@aol.com>

Our daughter was born with bilateral severe clubfeet on Oct. 1, 1999.  She  was casted for 5 weeks, and per our Dr. not getting the desired movement.  We have to decide next week which route to take as far as surgical intervention.  I tapped on to your website last night and found it very helpful.  I would like to receive the TIPS newsletter and any information you could send would be wonderful.   Our Dr. told us about a clubfoot clinic that they have in Italy.  You take your child to this clinic and people manipulate the feet for several hours and then hook the child up to a machine at night that gently stretches the foot.  No casting or surgery is required.  Do you have any information about this clinic, or where I might find such information?
My name is Becky Cresto, my daughters name is Eizabella.
Any information you can send would be so much appreciated!  Thank you!
Sincerely
Becky Cresto

Hi Becky
I have not heard about the clinic in Italy so I cannot help you with any information about it.  It is very difficult to decide on surgical intervention when your daughter is so young.  However I can speak in support of the effectiveness of surgical treatment for clubfeet.  Our daughter, Phoebe had surgery at 7 months and it produced a very dramatic improvement.  It was a difficult and very painful time but it was only for a couple of days and we were provided with medication to help relieve the pain for much of the time.  It is hard to imagine a non-surgical treatment producing results as good in such a short time.
However I am extremely interested in hearing about this Italian clinic so if you do find information about it I will be more than happy to put it on the TIPS website so that other parents can be aware of it.
Our TIPS organisation is currently only distributing our newsletter in Australia.   However all the relevant information that appears in  the newsletters is included on the TIPS website.
There is a vast amount of information to be gleaned from reading through the emails and getting abroad idea of the range of treatments for clubfeet.
I do hope all goes well with Elizabella's treatment.
Tom Clark

Date:   4 November 1999
From:   Jason and Jeannie Seidel <NShed@aol.com>

First thank you for taking a second to read my e-mail, my wife and I have a five month old son with bi-lateral clubfeet (right and left). We have been given very many false hopes like he will not need surgery, then it was found he would need surgery, but that it would be minor and one day of it. Now 3 weeks from surgery we just learned that our son will be getting pins in his feet. Being new parents and this our first child we are very scared and have many questions. If there is any literature you can provide please send it to 
       jazjas@aol.com
Also if you know anyone else with information please don't hesitate to pass my letter on.
Also I would appreciate you printing this in your newsletter maybe we can get some info from parents who have been down this road if needed they can also write letters to us if they have no access to computers
Jason and Jeannie Seidel
2202 Cornerstone
New Braunfels, Tx. 78130
Thanks again

Hi Jason and Jeannie
I have posted your email on the TIPS website.
I do understand the the worries your have with the pending surgery.  You are doing exactly what my wife and I did and that is to find out all that you possibly could about clubfoot.  All the information that I can give is available on the TIPS website.   So I can recommend reading through all the pages and following the many links available.  There is so much more on the Net then there was back in 1995 when our Phoebe was born. But please be assured from me that the surgery is quite common on clubfoot children and frightening as it seems to us the children recover very quickly.    Read the Email Correspondence pages of TIPS and you will get a good feel for the experiences that other parents have had with surgery on their small child.
All the best with your son's treatment.
Tom Clark

Date:   28 October 1999
From:  "Sarah FAGAN" <sandmfagan@btinternet.com>

Dear Tom,
Thank you for posting our email about Eddie. He's doing really well at 17 weeks old, our Physiotherapist now considers his feet to be "moderate" talipes as opposed to "severe" when he was first seen shortly after being born. He still screams a lot when we strap his feet, but sometimes seems to forget to shout and I've had him laughing whilst stretching his feet when he's in a good mood! I've been in touch with STEPS and they have sent me a 40 page information booklet and a few leaflets about how to get in touch with other families, which are invaluable. They also organise an annual get together in the UK, so I'd recommend that any UK parents get in touch with them. I wonder why Kingston hospital didn't tell us about them, or maybe they're not allowed to promote charities or groups outside of the hospital? Or maybe they're just not technologically up to date with email and the net, our Physio isn't anyway. Also Thanks to Martin Egbert, who emailed us with some sites to visit.
Many thanks for your time, this must take up so much of it
Sarah Fagan

Date:   27 October 1999
From:   "Garry Ewings" <garry@tecksel.com.au>

Greetings Tom,
Stephanie has had her second visit to Dr Bellemore our Orthopaedic Surgeon and the plaster casts are much better. In fact, the foot looks to be in a normal position. He did mention minor surgery in a few weeks time to lengthen the Achilles tendon.
Although nervous about making a decision for someone else, we feel it's the best thing.
Otherwise, going well.
Is there a talipes group that meets in Sydney?
Glad you got the tip about vinegar in the water, there is a chemical reaction between the calcium carbonate of the plaster and the vinegar. 10 minutes is better than 1 hour.
Garry & Kylie Ewings

Hi Garry and Kylie
It all seems to be going quite normal for your Stephanie.  I hope you all manage and cope with the surgery if it goes ahead. 
I do not know of any talipes group in Sydney.  But there have been quite a few people from Sydney who have visited the TIPS website and responded with email.  You may be interested in contacting them by email and suggesting a gathering. You will find all all the addresses on the TIPS Email Correspondence pages. This email on the TIPS website may help to get some response for you.  If such a get together is organised please let me know.  I have family in Sydney and I do visit there occasionally.
All the best with Stephanie's treatment.
Tom

Date:   24 October 1999
From:   Sr Joseph <passio@daltron.com.pg>

Dear Tom,
Annette Holian brought here a set of surgical instruments for the operation of club feet. We have many instruments, many near the end of their useful life, many whose pension is well overdue, some relatively new from generous donors, but not the kind specifically needed for operations for club feet on tiny children. We get a lot of club feet here- indeed at the airport, the murals on the wall show club footed individuals- so we are really thrilled to get a proper set of instruments to deal with them. I am the local general surgeon here. Dr Holian has taught me to do a very nice operative correction of the feet, but it will now be all so much easier with your donated instruments. Many thanks for your kind thoughtfulness. Next week I shall get the surgeon down the coast to come over to show him how to do the operation, then I shall go back with him to Madang to do two children there; after that he will be able to look after the children in his area- though without the benefit of the proper instruments.  We will try to spread the know;edge of the correct operation to the areas where the condition is common. Your instruments will have a far reaching and longlasting effect here. Once again many thanks. Kind regards and God's blessing on your life and family.
Sr Joseph.

Dear Sr Joseph
Thank you for your email.  Many people have contributed to the cost of those instruments and I am delighted to be able to show them your email so that they know their donations will have far reaching and long lasting effects in the lives of small children.
My daughter Phoebe has received wonderful medical treatment for her talipes and all at very minimal cost to us.  We are very fortunate in Australia and we are happy to be able to help in some small way the talipes children in PNG.
We wish you all the best in your work and we pray that ther will be very many children living better lives in PNG after your operations.
Tom Clark

Date:   15 October 1999
From:   ROBBIE ATKINSON <ratkinson@attcanada.net>

Hello, from Ontario, Canada!
Our son was diagnosed with club foot at our first ultrasound (16 weeks).  The Doctor informed us that our child would be born with a club foot, but that it is highly repairable and will more than likely walk, run and do sports.
When Ryan was born, we were glad that we knew about his condition and I read everything about I could get my hands on.  His foot was very turned inward and we saw Orthopaedic doctor when he was four days old.  That was when he had his first plaster cast.  He wore a cast, changed frequently for six months.  It never slowed him down.  The doctor in our city referred us to a Paediatric Orthopaedic specialist at the Hospital for Sick Children in Toronto - 8 hours away!
When Ryan was 10 months old he finally had his surgery.  His first surgery was delayed a month because he caught a terrible cold three days before we were to leave for the hospital in Toronto.  The surgery went well.  We flew home and his face lit up when he saw his big brother - we knew he was going to be fine.
Ryan learned to crawl with a cast and was not delayed in learning to walk at all.  He walked at 14 months old and there's no slowing him down.
Now Ryan is 2 1/2 years old, and he walks, runs and jumps - he is very active!   He doesn't seem to remember at all about the casts or surgery.  He has such a happy disposition.   His one foot is about one size smaller and his right calf is bit smaller than his left, but when you think about the bigger picture - we are extremely happy for our son.
We are heading for his yearly appointment next week.  I am sure it will be positive.
Good luck to other parents and children.
Natalie

Hi Natalie
Thanks for getting in touch with TIPS and giving us such a positive account of Ryan's experience with a club foot.  I was born with just one club foot and I can remember having one foot a good size smaller than the other.  It does catch up and the only person who has been able to tell the difference with my feet now has been an orthopaedic surgeon! 
I hope we hear more of Ryan's progress.
Tom Clark

Date:   9 October 1999
From:   Jenelle Nye <allpest@cairns.net.au>

What an excellent site for gaining information on Talipes.
It is wonderful to be able to access such a wealth of information.
I would like to stay in contact with TIPS on a regular basis. I plan on putting some photos and a storey together to add to the site.
Regards,
Jenelle Nye.

Date:   6 October 1999
From:   "Annette Holian" <annetteholian@hotmail.com>

Dear Ruth (see email dated 30 Sept), thank you for your interest in helping me improve the lives of the children in PNG. I am the surgeon going up to provide teaching to the local surgeons in the management of CTEV and other Paediatric orthopaedic problems. It is all on a voluntary basis and self funded so I appeciate any support that is offered. I would be delighted to have Sick Kids collecting for us. The Professor of Ortho Surgery there is Bill Cole, who worked here in Melbourne before moving to Toronto. There are 3 hospitals that I visit, all within an hours flying time of each other. Vanimo, Aitape and Wewak. They are on the NW coast. The region was devastated by a Tsunami last July. I am going up on Sat 9th Oct to see all those patients and take out their plates and rods. Aside from that I have taught the surgeon in Wewak to do the under 5yo CTEV corrections and some of the surgery for older chilren with untreated feet. These  children would benefit from the use of splints after the casts are off. There is no local skills for this, hence the need for pre-loved splints and shoes. Splints can be sent to; Peter Oehlerbos, Physiotherapist, Boram Hospital ,PO Box 395  Wewak, East Sepik Province PNG. email oehlerbos@global.net.pg. The other main centre is Senta Bilong Helpim, a mission centre set up to provide physio aand teaching for the disabled children and adults in the Sandaun Province. It was started to provide ongoing care for children after surgery in Australia. It is largely untrained volunteer staff learning quickly. They take videos of children, post them down for assesment and we send back opinions on diagnosis, exercise programs and the need for medical intervention and timing. More challenging medicine!! There is a big problem with Malaria, especilly cerebral malaria, that can leave a child blind, deaf or with a condition like cerebral palsy. So much can be done for these children but ther is no service povided. The country only has 3 orthopaedic surgeons, and CTEV correction is not on the list of required learning! Our contact there is Brother James Coucher; email passvan@online.net.pg.  Well its very rewarding work for me, and I regret that I can only get there once a year. Still, it's this weekend and I'm off. Best wishes and thanks again for your interest. About Evan, The children's feet do grow more slowly, and stretching needs to be a part of his daily routine, as much as cleaning his teeth. Calf strength is maximised by activities like climbing and jumping but the muscle bulk will always be down on the average child. Enjoy him. I'm sure he is a great kid. Regards Annette Holian.

Date:   6 October 1999
From:  Lynette Parker <Bagpipes@xtra.co.nz>

Hello
My name is Lynette Parker, my baby boy of 18 days has Talipes of the left foot.  I am interested to find out more about Talipes.   I live in Christchurch, New Zealand and my son was also born with a cleft lip and has Down Syndrome.  Please could you include me in your mailing list.
Lynette Parker

Hi Lynette
I am glad you have found TIPS.  If you get to read all the stories and emails on the this website you will know all that I know about Talipes.  The newsletters are mainly provided for parents who do not have access to the Internet and most of the material in these newsletters comes from emails and stories on the website.
I do hope TIPS can be of some help to you as you set out on this journey to get your baby boy's feet nice and straight.
Tom Clark

Date:   2 October 1999
From:   Jenelle Nye & Mal Pointing <allpest@cairns.net.au>

Looking for Advice,
We live in Cairns, Far North Queensland. My son Brett was born on the 26th July 1999., with a Right Foot Talipes.
We have been having his treatment through the Cairns Base Hospital. The Clinic Doctors have recommended Serial Plastering which I was originally told for a period of 8 weeks. There are three consulting doctors at the hospital which we have seen ( one twice and the other two once, with the head specialist being seen only once on the third plaster).
During the course of the Serial Plastering to-date we have experienced the following-:
* We were told that the Plasters would have to be on for Two Weeks, then taken off for one day, then reapplied. Typically this should be applied on a Monday then taken the following Sunday week.
* First Plaster applied at Two weeks of age, had to be taken off Three (3) days early as my son had put on weight and the plaster became to tight. His foot was swollen and very red with small cuts around the ankle and leg. The plaster had also left the pattern on his leg and ankle and foot.
* Second Plaster applied at Four weeks of age, had to be taken off Five (5) days early as it to had become to tight. His toes were the give away sign (this is what I use to monitor how it is going plus his weight gain). Once again his ankle, foot and leg were swollen, there were numerous cuts around the ankle area and I actually took him to our doctor for some advice. The doctor did explain that the plaster was obviously too tight. He wrote me a letter to take to the Clinic to explain his findings.
* Third Plaster applied at Six (6) weeks of age. This plaster went the distance of Eleven (11) days and when removed there was only sight swelling and a noticeable difference in the size of his feet by about a half a toes length difference.
* Fourth Plaster applied at Eight (8) weeks of age, which was taken of on Friday. His little foot was very swollen, very red and bruised underneath and on top. His leg once again had the pattern of the plaster and now there is a dramatic diffrence in the size of his feet by just over a toe's length.
There is no manipulation of the foot carried out prior to the plaster being applied by the clinic.
During the course of the serial plastering to date, the skin around the heel has become squashed up where the is excess skin and his heel is very swollen.
Are these normal concerns with serial plastering ???
I have my reservations with these ongoing problems about continuing with the plaster treatments.
I have taken our son to a physiotherapist who has shown me manipulation that I can carry out on the foot, he has also explained to me that the talipes is completely postural.
The Head Speicalist at the Clinic whom we saw on the third plaster application told us that the foot would require serial plastering for at least six months and then an operation at eight months. This is actually in direct contradication to what the other two doctors have said as i was originally told only eight weeks.
I have tried to seek out other specialists in Cairns however I kept getting told that the speicalist I am seeing at present ( I have only seen once) is the best person.
I eagerly await any advice. Please  Email to allpest@cairns.net.au.
Jenelle Nye & Mal Pointing.

Date:   1 October 1999
From:   ALEEM ARSHAD NIAZI <aleem_niazi@hotmail.com>

Thank you for your response. Due to some domestic engagements I was not able to answer your letter. The position is same as was two months back. We are doing Fatima's exercises as directed by the doctor regularly. At her eleventh month she now sits without supports but can’t crawl and move the walker. This might be due to eight months continuous plasters which have weakened her muscles. As I had mentioned in previous letters, it seems that she is slow in response also. We consulted child specialist here and his opinion is that she is bit mentally retarded too. The other doctor says as her exercises are very painful, she is bit hesitant and this is all due to psychological pressures and stresses. God knows better. We are hopeful Tom,
God Almighty who created us and put us into this hard time, will help her and us also.
With all our best wishes to all of you.
Sincerely,
Aleem and Tahmina

Dear Aleem and Tahmina
Thanks for keeping in touch with us.  I know it is a difficult time for you all.
 It really does not matter if Fatima takes a long time before she starts walking. But when she has been walking for a while I am sure you will find that her feet will improve.   We will keep remembering Fatima in our prayers.
Tom

Date:    30 September 1999
From:   Ruth Maude qbc@interlog.com

Dear Tom:
My son, Evan, was born with moderately severe bilateral club feet and constriction band syndrome of his left hand (three fingers were webbed and smaller and missing joints).   After casting he underwent surgery for club feet at North York General Hospital in Toronto and then plastic surgery for his fingers at The Hospital for Sick Children. He also had a hernia so by the age of 5 he had underwent 5 operations.  His AFO's were made at Sick Kids.
He will be 7 in January and although his feet still toe in he can do everything his friends and brother do.  His feet haven't grown in over a year - is this normal?   His calf muscles are so small and he some mornings his muscles are so tight he has to do stretches.
I cried when I read of the children in PNG who don't have access to the amazing medical facilities we have.  I would love to think that Evan's splints and AFO's were used to help someone else.
Actually I was in touch with Orthotics at Sick Kids and we could put a collection box there to collect used splints and AFO's. I have contacts with a Wycliffe Bible Translators and they have many missionaries going to PNG to do translation work who would be sending containers -- I could see if they could add a box of splints now and then.  Could you let me know if this would be welcome.
Ruth Maude

This is fantastic Ruth.  I am so glad that someone else feels as strongly as I do about having other children getting the benefit of our used splints.  I will be sending all Phoebe's AFO's and her Denis Browne boots with Annette Holian as she goes to Papua New Guinea this weekend.
I feel overwhelmed by the number of operations that Evan must have had by this.  I had one club foot at birth and for many years one foot was more than 2 sizes smaller then the other. However the foot did catch up to the point where there is no noticeable difference.  I hope and expect that Evan's feet will catch up on this slow growth period.
Tom

Date:    30 September 1999
From:   The Alexanders  walanan@spiderweb.com.au

Dear Tom,
I hope the attached is suitable, it took at lot more to write up than I thought, if it's too long let me know. We have included photos of Brooke before, during and now, she thinks it's all rather special!
Talk to you soon,
Regards Anne 

Thanks Anne
Brooke's story is great and I am so glad you included some photos especially of her feet before treatment and the lovely photo of her now.  I am sure many parents will appreciate those little hints and tips that you have learnt along the way.  I suspect that we are not even halfway with all the 'work' of getting Phoebe's feet straight but I do like your comment that it is only a short period when you look at the time we have her.
I wonder, if you can remember, why the doctor who first diagnosed Brooke suggested that roller blading should not be encouraged.  My wife, Beata and I were definitely considering roller blading for Phoebe.  At what age did Brooke start blading?
I will update the TIPS website in the next day or two and I will be creating a page for Brooke's story
Tom

Date:    30 September 1999
From:   Sarah and Michael Fagan  sandmfagan@btinternet.com

Hello,
It's so gratifying and a great relief to find information/response/mail on a condition that seems to be so untalked and seemingly unknown about in the UK. Our son, Eddie, born this year on the 29th June, has fixed bilateral talipes on both feet and has worn rather primitive "strapping' since he was a week old.
Our wonderful Physio at Kingston Hospital is also very interested (as we are) in any information or alternative pre-surgery methods as we are simply applying wadding around the foot and over the knee, then winding tape around whilst stretching the foot outward every day. Eddie is due for surgery at about 10 months old ( March/April next year, we hope). Having found your site and email, I find that information is much more readily available in Australis/NZ and the US, or is that typical British reticence?
I'd love to hear from other UK parents, we are in London if anyone wishes to contact us our E-mail address is sandmfagan@btinternet.com
Great to see so much support going on around the world.
Sarah and Michael Fagan

Hi Sarah and Michael
Thanks for your comments about the TIPS website.  There is a website, STEPS, based in the UK which also offers support to parents of talipes children.
Here are the contact details :
STEPS National Office
+44 (0)1925 757797
Email: steps@itl.net
Website: www.steps-charity.org.uk

All the very best with Eddie's treatment and especially with the surgery next year.
Tom Clark

Date:    27 September 1999
From:   Kylie and Garry Ewings garry@tecksel.com.au

Dear Tom
A quick tip for those removing plaster:
USE VINEGAR in the water
Our first attempt at taking the plaster off took 1 hour. Our physio told us it would take about an hour.
Our second attempt after putting about a third of a cup of vinegar in the baby bath water took about half an hour.
Our third attempt with roughly half a cup took 10 minutes. No discomfort to Stephanie and a warm bath after and she loved it.
From Kylie and Garry Ewings

Thanks Kylie and Garry for this tip.  I know we would have loved to have found anything that helped speed up that plaster and bath ordeal.  I will eventually get around to including this on the TIPS homepage with the general info about plastering.
Tom

Date:    25 September 1999
From:    Karen  Chubienuc@aol.com

I have a son who was born with Spina Bifida, Hydrocephalus and club feet.  He is undergoing a series of castings and splints and now, at 7 months of age, he is experiencing a different problem.
His lower leg bones are twisting - quite severely.  I can't get into see the doctor until October 18th, he said that it's OK to wait until then.  But I'm frantic, I need to learn more about possible treatments to fix the twisting.
Any info would be appreciated. 
I'd also like to recieve your newsletter.
Thank you
Karen

Hello Karen
I really wish I could give you more info.  However all the info that I can provide is already available on the TIPS website.  We provide a newsletter because so many of the parents who have a clubfoot child do not have access to the Internet.  Most of the info, primarily the stories, are in fact from the website.
If you browse through the Email Coorespondence you will learn that there is wide range of treatments for children with club feet. The more severe cases most often require surgery.   Most parents are at first quite alarmed at such a prospect however we discovered with our own daughter that it was not as traumatic as we expected and fortunately our Phoebe recovered remarkably quickly, within a few days.
I really believe that your own doctor is in the best position to advise you on the possible treatments for your own son's condition.  Other than getting such professional medical opinion you may find some support by reading about the experiences of other parents.  Most of these accounts are quite positive and you may be inspired to get in contact with some parents who have a situation similiar to your son's.
I can assure you that if any surgery is performed it is typically not even considered until a child is 7 months or more.  So I do not think you need to be concerned about waiting for your next doctor's appointment on the 18 October.
I do hope you can find some info from the Net that will give you more confidence and I do wish you all the very best in the treatment you son receives.
Tom Clark

Date:    20 September 1999
From:    The Alexanders  walanan@spiderweb.com.au

Dear Tom,
Our daughter Brooke was diagnosed with talipes in Feb 90. At that stage the scanning equipment that was available in north queensland didn't show any signs of talipes.
After she was born at 7days I was told of the procedures that would take place- plasters, operations, and boots & bars.
But it has been well worth it, she is now 9 years 8months and does ballet, swimming and tennis, just like the other children in her year. We are still concerned about her left foot as it is starting to turn again- you make the 5year checkup then the 8 year one and you get a bit "cocky", thinking that you're all clear but we'll survive, we now we've done it once!
Her sister born 18 months after was fine.
I teach preschool and I have one boy with mild talipes in my class and his sister also has it. They have been treated with fiberglass splintts and orthotic supports.
If I can be of any support to your group or assist in any way please let me know,
Yours sincerely
Anne Alexander

Hi Anne
Thank you for your offer to help TIPS. You have had 9 years experience with talipes compared to my 4 years. I wonder if you would be interested in responding to some of the emails that are sent to the TIPS website. I usually only get one night a week to spend on TIPS emails and at times several weeks go by before I can respond to these emails, so I would definitely appreciate some help in this area.
Please think about this and if you are keen we could make some arrangements where I could start by forwarding the emails from parents emailing TIPS for the first time. When you respond all that you would need to do is cc: to TIPS so that I could convert your response to HTML and include it on the Email Correspondence page.
Let us know what you think.
Tom

Date:    18 September 1999
From:    Melody <lordwhybro@mail.one.net.au>

Dear Tom,
I have just read Wendy's email (dated 8 Sept) about her six year old who possibly faces another operation. This situation sounds similar to Max's last year. We noticed that he was walking on the outside of his feet and when we spoke to his surgeon he pointed out that his heels were out of alignment with his legs.
The surgery that he had last year was primarily to realign his heels and he also (you may recall) had a split anterior tibial transfer, where half the tendon that runs down the inside of the ankle was joined to the tendon that runs down the outside of the ankle to help it work better and pull the foot back into line. The operation was highly successful and Max is currently without any form of orthotics or special boots; however, we will see if that changes when we go back for our 12 monthly checkup.
I don't know if Wendy's surgeon would be considering the split tibial tendon transfer as well as the heel realignment but I do know that in Max's case the result was worth while. Any parent would be as apprehensive as we were about submitting their child to another lot of surgery but looking back it wasn't nearly as scary or difficult as we feared. At least Loren will be only having one foot operated on so she would be able to maintain some mobility, but we recommend hiring a child-size wheelchair from your hospital (it's not expensive) until she can walk again.
Some other thoughts for Wendy: There is quite a good book about going to hospital called "There's a Hippopotamus on the Hospital Roof Eating Cake" by Hazel Edwards. We read this book with Max before he went to hospital and were able to prepare him for some of the procedures etc that would happen to him. We also found a toy stuffed hippo which we bought for him as a special hospital companion. When he came round from his operation with bandages on, we had bandaged the hippo up as well!
Also, if you can get a temporary disabled parking permit while Loren is incapacitated it is very, very useful.
Lastly, chat with Loren's school about how she will manage while she is recovering. Max's preschool teachers were very helpful and having them on side was fantastic.
Best wishes,
Melody
P.S. Tom, I am sending this email direct to Wendy as well.

Thanks again Melody.  I am so glad you keep an eye on the TIPS emails.  If we have to go back to hospital with Phoebe I will certainly be looking up that book.
All the very best to you and your family.
Tom

Date:    13 September 1999
From:    Martin Egbert <martinegbert@earthlink.net>

Hi Tom,
As I had mentioned in my fax of June 24th about the Ponseti "Non-Surgical" method of treatment, a doctor from New Zealand has just concluded his 2 yr fellowship in Canada and the US at the University of Iowa. While there he was trained in the Ponseti "Non-Surgical" method of treatment as described in Dr. Ponseti's article at the Virtual Hospital at http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Clubfeet.html We had our child treated by this method and he is doing great. The photo's of his feet are posted under the date of June 24th on your e-mail list. Since the casting was completed on May 28th, we have had 2 surgically oriented pediatric orthopedists examine our sons feet. Both of them indicated that they agreed that after being treated with the Ponseti method of casting, he would no longer need the major ankle surgery.
The doctor that has just returned to New Zealand is Dr. Haemish Crawford and he has been treating clubfeet for 10 years. He had just in the past two weeks located at the Starship Childrens Hospital in Auckland, New Zealand. His work phone is 09 5220939 and his e-mail is hacrawford@xtra.co.nz We met Dr. Crawford when we were at the University of Iowa having our child treated.
I am very grateful to have found this "Non-Surgical" method for the treatment of our child and would highly recommend it to any parent trying to decide a course of treatment for their child.
I am also attaching the photo's of another parent at the parentsplace.com web site who posted photos of her childs feet being treated with the Ponseti method casting process. Those photos are found at http://albums.photopoint.com/j/AlbumList?u=76323&a=601182 or also at http://boards.parentsplace.com/messages/get/ppclubfoot10/1.html I hope that I spelled all of these links correctly so that you can get to them.
Please feel free to e-mail me if you have any questions at martinegbert@earthlink.net
Martin Egbert

Hi Martin
Thanks for your invitation to be part of ParentsPlace. I would really love to have the time to explore this site. As it is I barely have the time to keep up to date with the TIPS email correspondence.  However I am sure there are many parents who are extremely keen to learn more about clubfeet and who will profit from venturing into ParentsPlace so thanks for this invite.
As yet I have not been able to explore the links you provided about the Ponsetti method of treating clubfeet.  I will look into them soon and get back to you.  Thanks for keeping us informed about this method.  If enough parents keep mentioning this method to their doctors there may be a better interest and response from the doctors here in Australia and elsewhere.
All the best to you and your family
Tom

Date:    14 September 1999
From:    Abina Shillingsworth <murandah@pnc.com.au>

Dear all
I have found a wonderful site....My little boy Murrandah is now 12months old he was born two months premature with a lot of problems (Hernias which have been repaired, whole in the heart (getting repaired 28.10.99), high arched palate, and a very rare syndrome Opitz C, and left foot talipes.
He has had plaster on and off through his 12months of fighting for his life (in and out of hospital twice with pneumonia).  He has had foot surgery about 3 weeks ago to cut his tendon. He then had his last plaster for two weeks and now day 2 of boots with a bar coming from one boot to the other on 70 degree angle at night. He hates them last night I was up every two hours trying to settle him. His and my heart rate go up!!! Has anyone any tips for me does it get better??? He has to wear these boots for a least a couple of years only at night .
Please Help
Abina Shillingsworth
Blackheath Blue Mountains, Australia

Hi Abina
Your little Murrandah certainly has had many problems and you have had much to cope with. I havn't had any complications in managing Phoebe so I do not feel confident to offer any advice. For what it is worth I can tell you about Phoebe's experience of wearing denis-browne boots for just over 12 months. These are the boots with the bar. We began by putting them on her feet for short periods of time usually when she was in the car and wasn't trying to move about. When we introduced them at night we only left them on for a very short period, taking them off when she cried. Then we gradually increased the time before we took them off. It took a few weeks before she got used to being able to roll over in bed and then she could sleep through the whole night with the boots . At all times we spoke positively about her new shoes. They were her special boots and she proudly showed them off to friends and family. Once she was sleeping through the night regularly with the boots we were very insistent on her wearing them every night. I think our consistency helped her to accept them and it became very rare for her to complain.
I can tell you that there was great elation from us and especially Phoebe when she eventually stopped wearing them at about the time of her third birthday.
These boots really did help keep her feet straight so I would strongly encourage you the make whatever effort it takes to help Murrandah get used to these boots and then to be perservering in keeping them on his feet every night.
I hope these tips can help and maybe others may offer suggestions as well. I wish you all the very best in helping Murrandah's to overcome all his problems.
Tom Clark

Date:    14 September 1999
From:     "ALEEM ARSHAD NIAZI" <aleem_niazi@hotmail.com>

Dear Tom and family,
With hope to find all of you in good health. Things have gone smoothly so far for Fatima and now she will be wearing splints on 21st Sept. The surgeon had advised earlier that there is no need for Fatima to wear the splints but after seeing her feet and their tendency of reversla, again he has changed his decision. As IU had told you earlier, the surgeons all good in the world but the main problem is post surgical care and treatment. The tendons seem to be getting stiffer as she cries too much in pain when I do excercises three times a day.
She is still very weak and cant stand. Now in her eleventh month, she is just sitting. The child specialist has now told that she is bit slow starter and a little mentally retarted too. So strange and funny dont you think Tom? We are in a state of shock. One after another problems are filtering through our lives. This is life what can we do?
I am afraid after sometime may be one year or two she may not need another surgery and again so painfull process!
Pray for us Tom. God may succeed in our efforts.
With all our best wishes
Aleem and Tahmina

Dear Aleem and Tahmina
Thank you for your update on Fatima. It is good to hear that she is fine. The splints will be much easier to manage than the plasters and they really do help to keep the feet straight in these early years when she is growing so fast.
I understand how anxious you are for Fatima with the prospect of further surgery being needed and the possibility of being a slow starter. We also feel similar concerns about Phoebe. We cannot know what the future will be but we continue to pray and then we trust that our doctor is doing all that is necessary to give Phoebe the best chance of having good feet.
I would recommend that you keep asking your doctor questions about any concerns you have. In your case I would be asking the doctor whether Fatima should be crying in pain when you do the exercises. Phoebe did not walk until she was 18 months old, so I would not at all be concerned about Fatima not walking as yet. Let her take her own time, after all her feet have been through a horrible time.
We wish you and especially Fatima all the very best and I hope and pray that everything will turn out far better than you expect.
We will think of you in our prayers
Tom

Date:    13 September 1999
From:    Martin Egbert <martinegbert@earthlink.net>

Tom Clark,
I would like to invite you and those who visit your site to visit a Clubfoot message posting site called Parentsplace.com. It can be found at http://boards.parentsplace.com/messages/get/ppclubfoot10.html There are about 100 plus parents of children with clubfeet who regularly post and respond to messages about clubfeet. Although most of the parents are from the US, we do have some from the UK, Austrailia and other parts of the world.
Thanks for your site,
Martin Egbert

Date:    12 September 1999
From:    Jennie Friend <jennief@primus.com.au>

Hi Tom,
Not sure if you remember me, I'm Todd's Mum, Jennie. Just a quick note to tell you that my email address has changed again (apologies, the ISP went bust ) it is now jennief@primus.com.au if you want to change it on the web site. I have attached some photos of Todd's feet just before he had his bone fusion, as I have had a few requests for pictures of what talipes feet look like when kids get older (after correction), feel free to add them to the website also.
As for Todd himself, no great improvement yet, as his feet haven't grown very much at all since the original bone fusion in July, 98.
I will try and keep you updated.
Yours sincerely,
Jennie Friend

Hi Jennie
I have updated your email address on Todd's page. I have also added one of the photos of Todd's feet. I am not sure of the limit on the free storage space that VicNet has allocated to TIPS. However I do encourage you to send more photos showing the progress in Todd's feet.
I hope you do see more improvement soon.
Tom

Date:    10 September 1999
From:    Debs and Georgi  DEBSIMP@aol.com

Hi
In the UK Hello Magazine - Jodie fosters son (13 months) had one leg in plaster - the quote was 'that his foot was put in cast to correct an inward facing foot' ------- sounds like clubfeet to me.
Don't we need someone really famous to bring this condition out so that more research can be done into it and treating it?
Bye for now
Debs and Georgi - UK

Thanks Debs
It does sound like club feet.  I have done some brief searching of the Net to try and confirm this but  no luck as yet.  However I think I will add Charles Foster to the TIPS home page anyway.
If you learn anything more let us know. Thanks again.
Tom

Date:    8 September 1999
From:    "Marina Fonseka" <mafonseka@one.net.au>

Hi Tom,
Just thought I would update you with Jehan's progress. He is finally off the plasters, after three months. Today he was fitted with his first AFO's. I was quite surprised as to how uncomfortable they look. I was under the impression that they were much more comfortable than the plasters. Jehan has been crying constantly after we got back from the hospital. He finally fell asleep after a feed. We are worried that he will never get used to these AFO's. Have you got any suggestions on how we can make sure that Jehan does not get any blisters from the rubbing of the AFO's against his skin. The AFO's he has are not quite like the ones I have seen on the TIPS website. They go over the knee as well. I was told that the reason for this is so that his heel is flat against the AFO and the cap over his knee will prevent him from lifting his heel.
I was also wondering if we should take the AFO's off atleast twice a day to give him a break. The surgeon asked us to take it off only at bath time.
Thank you in advance for your help.
Judy & Anton

Hi Judy and Anton
Jehan's AFO's are quite different to what I know about. We were able to have socks between Phoebe's feet and the AFO's so we did not have any problems with blisters. I am sure this is possible with Jehan and maybe you will need to use stockings to cover his knees as well. I have no doubt that Jehan will get used to the splints. It only took a day or two for Phoebe to get used to any change in the plasters or splints she used. (However it did take alot longer to get used to the denis browne boots with the bar). Knowing what my wife and I were like with Phoebe we would not be taking off those AFO's any more than was necessary. We were so keen to do everything we could to help the correction of the feet. However I will mention that there will be a few days during our Melbourne summer when it is so hot that you will need to remove Jehan's socks and AFO's. So while the weather is cool I recommend you keep the AFO's on all the time.
I hope these comments can help and I wish you all the very best in managing Jehan's AFO's.
Tom

Date:    8 September 1999
From:    "Wendy" <martinby@ihug.co.nz>

Hi there I have a 6 year old girl born with one club foot. Loren had surgery at 5 months which was successfull until about 6-8mths ago we noticed her walking on the outside of her foot. So we contacted her surgeon who suggested physio which helped a little but not enough so we had her boots modified to help her from walking on the side of her foot. There has been an improvement but after visting the surgeon he suggested another operation on her heel this time to place it in alignment with her leg. Has anyone else experienced this problem if so I would appreciate hearing from you. Thankyou Wendy

Hi Wendy
I hope there are others who can respond to your email. I would dearly like to see the responses you do get. I am very concerned about my own daughter, Phoebe who is 4 and while everything seems to have progressed well so far she is also walking on the outside of her feet. I suspect she may need further surgery within a few years. I dread this thought and like you I would indeed appreciate hearing from others who have faced such a situation.
I do wish that all goes well with Loren as you prepare her for the operation and help her through this difficult period. Please let us know how you do manage.
Tom Clark

Date:    8 September 1999
From:    "Garry Ewings" <garry@tecksel.com.au>

Hello,
It's good to see so much information on the net and to realise that there are so many people sharing similar problems.
My daughter was born 26 August 1999 with her left foot almost parallel with the inner side of her leg.
Having a friend with Spina Bifida has given us the opportunity to get in touch with a specialist quite quickly.
However could you send any additional information so that my wife and I could read before we see him.
Thank-you very much for you help
Garry Ewings

Hi Garry
I don't have any more information then what is on the TIPS website. However I am sending a copy of this email to Angela who distributes our newsletters and our brochure and she should be able to post some more material to you and also invite you to subscribe to TIPS to receive our newsletters.
All the very best with the treatment for your daughter.
Tom Clark

Date:    8 September 1999
From:    "Jan and Simon Cross" <simon153@no2359.freeserve.co.uk>

Dear Tom
My son has worn splints for over two years and appears to have developed an allergy to the plastic in his new night splints. When I removed them two days ago I found a perfect imprint of all the plastic bits of the splints on Oliver's legs which looked like a very bad case of sunburn. Even now this has not gone away.
At a routine appointment to our dermatologist he stated that he thought Oliver has an allergy to the splints. I will speak to his orthotist, now that I have seen the drmatologist but I was wondering if anyone had been through this with their own child and if so what solution was found.
Thanks
Jan, Mum to Oliver aged 3.4

Hi Jan
I have not been aware of any allergic reactions to splints. However I would have thought that there were different types of material that could be used to make the splints and hopefully you will be able to try a different substance.
Anyway I hope some others can give you better feedback.
All the very best with Oliver's progress.
Tom

Date:    8 September 1999
From:    "Colin Whyatt" <whyatt@cfls.ndhq.dnd.ca>

Hi,
We would like to thank you for sending us the Tips newsletter, we find them very interesting and informative. You may remember in 97 when I first contacttd your organization and told you the story of my son, Dylan, who was born with Talipes Equinovarus on both feet. Dylan was born on the evening of 04 Dec 97. The very next day he was placed in casts from hip to toe. At 4 and a half months the right cast was removed for good. The left remained in a cast up to 6 months of age. At this point he had to wear Bonnie Stuart boots/bar at bedtime. This went very well considering how uncomfortable he must have been. Since about Nov of 98 Dylan has been boot free. All that is required up to this date are stretching exercises. Our Doctor has informed us that he may need corrective surgery in the near future to straighten out his toes and possibly to loosen the tendons in his left foot. Other than that he has progressed very well, he can run and jump with the best of them, sometimes too well. Next Doctor visit is in Nov, wish us luck.
P.S. You no longer need to send us the newsletter, we have access to the internet. Thanks again.
Colin & Patty Whyatt

Thanks for your update on Dylan's progress. I really do wish you luck with your next doctor's visit. I am glad you find the newsletters helpful. Nadia is now the new editor of the newsletters. Before the last newsletter my wife Beata was the editor so the newsletters contained lots of emails from the website. I cannot say that this will be the case from now on, so I suggest that it might be worth continuing to receive them.
Once again thanks for the feedback.
Tom

Date:    7 September 1999
From:    "Dr. Shamsul Alam" <salam@khulnanet.net>

Dear Sir:
It gives me immense pleasure to introduce my self. I am an anesthesiologist working at my own pain center which is basically "Physical rehabilitation in Pain management".
It would be highly appreciated if this center is provided with more information about TIPS at your earliest convenience.
Please note that this city has no web site access, only email.
Thanking you in anticipation.
Sincerely
Dr. Shamsul Alam
Bangladesh

Dear Dr Shamsul
You have contacted TIPS (Talipes Information Parental Support group) which is a small group of parents in Melbourne Australia. We seek to support parents who have a child born with talipes. No one in our group has any medical background or experience. The information we provide through our brochure, our newsletters and our website is aimed at giving the parents more confidence and comfort in handling a talipes baby.
I have attached to this email 2 documents in Microsoft Word 6 format. The "talipes" document is the general information we provide for new parents. The "emails" document is some recent emails which appear on our website to give you some idea of the type of support we offer.
I hope this is the type of information you wanted.
Tom Clark

Date:    5 September 1999
From:    "Muschalla" <kaylinm@mail.austasia.net>

Hi to all the TIPS members. Thanks for the newsletter as usual. Our little boy is nearly 6 now and hasn't looked back since his operation at 15 months on his one foot with talipes! I read we can get our newsletter electronically so I don't mind if you wish to sent it on the e-mail . If you wish to send some information forms - I will be happy to send some around Geelong on my travels. I would like to give some to our surgeon - his son is in the same class as my son at school!
It is great to get the newsletter and that the group is going well . it is so nice to know that there is a support group for those who need help like we did when Matthew was born.
regards
Kaylin Muschalla

Hi Kaylin
I am forwarding your email to Angela who distributes our newsletters. She may be able to send you some of our brochures which you can pass around Geelong. I am also sending your email to Nadia who is the new editor of the TIPS newsletters. Only a couple of times have I ever sent the newsletter as an email attachment. However I will leave it to Nadia to consider the possibility of distributing the newsletter electronically to any TIPS members who may be interested in such an arrangement.
Thanks for your feedback.
Tom Clark

Date:    4  September 1999
From:    Wendy Will  willw@sapphirecoast.net.au

My daughter is looking for information on Talipes as her daughter was born with a club foot. She had her first operation at 6 or 7 months.
What are the chances of a repeat situation etc
Wendy Will

Hi Wendy
All the information that I have is available on the TIPS website. There is general information about Talipes on the home page and then pages of stories from parents who have a child with Talipes. There is a vast number of emails also from such parents and also a page of links to other sites which can provide information about Talipes.
The chances of a repeat situation are 3:100 as far as I can ascertain. This is a relatively small chance but it is much higher than the average rate of 1:1000 live births of Talipes.
It is more common for a parent and then their child to have Talipes (as in case of myself and my daughter) rather than 2 children (siblings) in the family.
I hope this helps
Tom Clark

Date:    2  September 1999
From:    Pat Ashton <ashton@rivernet.com.au>

Dear Tom
Just a note to update you on Eli's latest specialist appointment. The Doctor isn't happy about Eli's calves being so small as it is apparently a sign that the tendon (I think!) is still tight. Eli's right foot is turning in a bit and he is also walking a bit on the outer edge. Anyway he doesn't want to see us for a year but we are now in the hands of the Physiotherapists at the hospital. They will be plastering Eli for 2 weeks, just while we wait for his new orthotics to be made. I'm not looking forward to this. We have talked to Eli about it and we saw a young boy at the hospital walking in his plaster so we have talked about Eli having the same thing. He seems to understand but we will have to wait and see.
Until next time,
Pat Ashton

Hi Pat
Thanks for the update.  I have included this update on "Eli's Story".
Phoebe is now 4 and she is also wearing orthotics in her shoes and while is it helping I am still concerned about her gait.  We go back to see the "foot" doctor in a few months.
I hope Eli gets a better report in another 12 months.
Take care.
Tom

Date:    1 September 1999
From:    "peter" <pjohnston@albury.net.au>

I have often read your site, reading with interest other people's experiences. My son has a left clubfoot, diagnosed at birth, he underwent serial casts and then boots with a bar, at the moment he has a plastic splint. He is 18 months old and also was diagnosed with a horse kidney in utero, and since visiting a specialist has also been diagnosed with partial sacral agenesis, he has not yet had surgery, although he need it in the future as the doctor believes that his foot will revert back to the deformed shape, for this reason surgery is put off as long as possible.
From information I could gather, my son's clubfoot differs from the "normal" clubfoot in that it is caused by the lack of development of the sacrum. This is linked to neural tube defects or spina bifida, and may include complications of the bladder. My son recently developed a hernia and this may be linked to a general weakness in the area. I would love to hear from anyone with a similar story, I know it is not common to have further complications with clubfeet. To finish my son walks, runs and jumps around, and manages his splint beautifully. Thank you for your page.

Hi Peter
I can only put your email onto our website and sincerely hope that there are others "out there" on the Net who do have a similar story.
No doubt any contact with parents who can share the types of experiences you have had with your son will be greatly appreciated.
I really hope you do get some feedback through this site.
Tom Clark

Date:    1 September 1999
From:    Jane Cavanagh   (jawacasq@alphalink.com.au)

Dear Sir/Madam,my name is Jane Cavanagh and I am due to have a little baby boy with a left foot talipes in approximately seven weeks or sooner as the baby is in the breech postion.
I was given your address by a member of the talipes association and she advised me to contact you for information about talipes. My ob/gyn doctor says to wait until the baby is born before contacting any specialists in this field and that he would have a paediatrician see the baby soon after he is born. Is this alright or do you recommend contacting a specialist first?
I'm really not sure what else to ask at this stage............any advice you have would be greatly appreciated.
Thanks for taking the time to read this,
Yours sincerely,
Jane.

Hi Jane
We did see a paediatric orthopaedic surgeon some months before Phoebe was born.  It was only the one visit and we did not learn much more than the fact that he would come to the hospital a day or two after she was born to put the feet in plaster.  I am sure that most hospitals would immediately contact a specialist whenever there was a talipes birth.
Of course we had lots of questions at the time but most of these were best answered by the parents we met through TIPS.
My wife and I found that the best preparation was to read and find out as much as we could about Talipes.  There will be some specific questions to ask the doctor when you do get to see him/her and you can also direct questions to us at the TIPS website.
I can assure you that the more you learn about talipes the less anxious you will be.
I hope all goes well with the arrival of your little boy.
Tom Clark

Date:    28 August 1999
From:    Alex Dichmont alex@dichmont.freeerve.co.uk

Dear Tom,
Matilda (19 mths) is now walking around confidently - but she tends to walk on the outsides of her feet. Is this to be expected? Will they gradually flatten out the more she walks? I wonder whether anyone has any advice on this for me.
Alex Dichmont

Hi Alex
Phoebe's feet did flatten out considerably with lots of walking. However her feet still touch the ground on the outside first. She is now 4 and wearing orthotic inner soles which have helped her put her feet down almost completely flat.
Now that Matilda is walking confidently I should warn you to get ready for lots of falls and bruised knees.
All the best.
Tom

Date:    28 August 1999
From:    "Helen & Bruce" <Feathercrack@bigpond.com>

I have a 19 month old boy who was a breech baby and has a condition similar to club foot. He is a toe walker and the surgeon said the treatment is similar to that of a club foot patient. He has now had his 2nd lot of casts applied at the Royal Childrens Hospital in Melbourne. His first cast were on for 4 and a half weeks, and for that 4 weeks he showed no sign of wanting to move around, but now he is wanting to crawl around and ride his push along car. To enable him to do this I feel he requires some sort of rubber to help him grip as his casts keep slipping on surfaces. I noticed you suggested some socks or shoes to go over the casts I would like to know where I can obtain these products from. We live in Chelsea Victoria.
Benjamin has not got the deformed turned in look about his feet, however, his achillies tendons are very short. Has there been other cases similar to Benjamin that you could pass onto me. I am interested in knowing if this is to be on going treatment or if surgery will be required, I am new at all this and would appreciate any information available on other similar cases and the future for my son.
Thank you very much for your time.
Helen Cracknell

Hi Helen
I am not aware of any other case similiar to Benjamin's. However I do know that surgery is often performed on talipes children to lengthen the Achilles tendon.
We did find socks and some soft booties to go over Phoebe's plasters. This was mainly to keep her toes warm and it was well before she began to walk. One particular pair of socks did have little rubber pads spread like pokka dots over the sole. We got all our socks and booties from normal retail shops.
I am sure there are plenty of parents reading your email who could give you some better, first hand , experience of handling an active toddler in plasters. I do hope you get some good suggestions.
Tom

Date:    27 August 1999
From:    Shah Rahman <s_rahman@ece.concordia.ca>

Sir,
Thank you for your reply and valuable suggestion.Could you Please tell me when he needs to wear the splints and how I can bye a pair of new splints.I would be very glad if you give me company address in Canada or USA.Then I can bye that and send it for my nephew.
Sincerely yours
Shah Rahman

Dear Shah
The doctor treating your nephew is in the best position to advise on the time when plastering of his foot should be stopped and a splint be used.
For our Phoebe, her feet were in plasters for about the first 3 months and then splints were used up until her surgery at 7 months. She did have a fairly servere case of talipes so it was desirable to have surgery. Surgery is not needed for the less severe cases of talipes.
If splints cannot be obtained in Bangladesh then I would suggest contacting a hospital in Canada. Staff at the hospital should be able to advise as to where orthotics (orthoses) are made. You will need accurate measurements of your nephew's foot.
I hope you are able to help with your nephew's treatment.
Tom

Date:    26 August 1999
From:   Bergetta Sterling  <bksterl2630@erols.com>

Greetings from New Jersey, USA!
Our son, Devon is scheduled for surgery to correct his club foot condition in two months. As the surgery gets closer, I'm having more and more doubts about our decision to have his surgery done at such a young age. (He will be 8 months old.) I'm most concerned about side effects from infection, the type of discomfort he will have, and any side effects from medication used to put him under. Where can I find some first hand info on this, what to expect, and are we making the right decision in agreeing to surgery?
Bergetta Sterling

Hi Bergetta
If you keep reading all the emails on the TIPS website you will get first hand info from parents who have been there with surgery at such a young age. You will realise that 6 to 8 months is very typically the age for club foot surgery.
In hindsight I now realise it was a "good" age for our daughter's surgery. She got over it quickly and does not seem to have any memory of it. She also had no infection and no side effects from medication.
I personally was dreading the thought of Phoebe needing further surgery at say 4 years which is not unusual. At this older age she would be much more conscious of what is going on and there would be much resistance and she could develop an aversion to all things connected with doctors, nurses and hospitals. Thankfully we have been spared of all those difficulties.
There is no 'good' time for surgery but I think at this young age of 8 months there will probably be less overall problems.
What can you expect? Most often, a good result and your Devon back to his normal self in about 3 days or even earlier in some cases. When you read many of the emails on the TIPS site you will realise that some children have had more difficult experiences. I believe it is good to be made aware of the difficulties that can happen but then go into the surgery hoping and believing that your son will be amongst the majority that come out it with no problems at all.
I really hope that is the case with Devon. All the very best.
Tom Clark

Date:    26 August 1999
From:   Blyskal Joanne JM <joanne.blyskal@phwilm.zeneca.com>

Your website is great!
I have been involved in other clubfoot boards (parentsplace) and what you have produced is wonderful. I will be an active reader of your website.
My daughter is 4½ and has a right clubfoot. She is doing beautifully.
Jo Anne

Hi Jo Anne
Thanks for your enthusiastic response. 
It is nice for us all to hear that your daughter "is doing beautifully".
Tom

Date:    24 August 1999
From:    Shah Rahman <s_rahman@ece.concordia.ca>

Sir,
I am a graduate student of Concordia University,Montreal. I am really very much sorry to take your valuable time. But it would be real help for me.
My nephew, who is in Bangladesh, is 2 months old and is suffering from Equinovarus (CLUB FOOT TALIPES) on his foot. Since his skin is very delicate, the doctors are plastering it for 15 days and keeping it open for one week. This process is ongoing and started since he was born. When they open the plaster the foot looks to be in good shape but shows signs of little deformation after a few days. Doctors are saying this process will cure the deformities.
Please give me your opinion about this treatment. Are they following the right treatment? I am waiting for your kind reply.
Thanking you,
Shah Rahman

Dear Shah
Frequent plastering in the first few weeks and months after birth will definitely help to correct the less servere cases of talipes. Just how frequently the plastering is applied will vary. When I was born there were breaks in the plastering for a week or two and then more plastering. When our Phoebe was born the plasters were changed every week for the first month with no breaks. Her plaster was changed less frequently after the first month or two.
The treatment your nephew is receiving sounds fine to me. You do not have any cause for alarm. Unfortunately all the splints we have used for our Phoebe have now been sent to Papua New Guinea. There may be others who read this email on the TIPS website that can help in getting a pair a of used splints to your nephew.
Tom Clark

Date:    23 August 1999
From:   Glenda Gordon  <GGORDY@bigpond.com>

I have been reading and getting much comfort from your site over the past year. Thanks for keeping this site so up to date !!!! My son has moderately severe bilateral talipes and is having surgery on 21 September 1999. He will be 6 months old. He has had no casting for the last 2 months and although it has been wonderful not having to deal with the skin irritations and bath him every night, I have felt so guilty , thinking that I should be doing something. I know that this decision is based on the fact that even with vigorous casting the end result will be surgery but as a parent you only try to do the best for your child. I am sure this feeling is felt by many. Also I would like to know , who usually does this casting , is it a Physiotherapist or the Orthopedic Dr. himself ?? What is most common and who is most qualified?
Thanks again .

Hi Glenda
I am pleased to hear that the TIPS website has provided some comfort for you.
My understanding is that the casting has the most effect in correcting talipes in the first few weeks or months. I can well understand that, once your doctor had decided on surgery for your son, then any benefit that the casting might achieve in a month or two before the operation would be surpassed by the surgery anyway.
I can well understand the guilty feeling, I know that around the time of Phoebe's operations were we often wondering about what more we could we do. In hindsight we are quite comfortable that our surgeon had everything under control.
It was our surgeon, a paedriatric orthopaedic doctor, who did all the casting on Phoebe, right from birth till after the surgery. From my reading of TIPS correspondence I would assume that this is generally the case.
I hope all goes well with the surgery and I hope your son's feet come out quite straight.
Tom Clark

Date:    21 August 1999
From:   Tyr  <tyr@tac.com.au>

Hello ,
I would appreciate your expertise in talipes conditions. My favourite niece in UK, now 5 months pregnant, has been told her baby has talipes. As well she's told it could also have a genetic defect resulting in baby being either still born, dying within a few days or a lifetime of nothingness. She will get the result of the aminocentesis next week , and must decide whether to terminate.
Do you know if this condition is associated with talipes as she seems to have been advised it does, as she wasn't considering termination on the grounds of talipes alone.
Thankyou for your time,
Tyr.

Hello Tyr
I do not have the medical knowledge to advise of any genetic condition associated with Talipes. Personally I have formed the view that talipes rarely occurs with any other condition. However I will include here the email I received from Melody Whybro who is the mother of a talipes child and has done some extensive research into talipes and other conditions:
Just some info about other genetic disorders related to talipes. I was quite alarmed to hear that talipes was linked to Spina Bifida, until I did some more research and found that the talipes of spina bifida kids is caused by their spina bifida, and it is not true congenital talipes such as our kids have.
I have never heard of talipes being linked to Down syndrome (none of the medical texts at work mention it and, believe me, I've read every word relating to talipes!) but this might be a matter of confusion since the 'triple test' looks for both Spina bifida and Down syndrome as well as other congenital abnormalities.
I would like to encourage everyone to ask their own doctors these questions and keep asking questions until they are satisfied. We are very fortunate to have an orthopedic surgeon who answers us honestly and patiently and I hope others have too.
Melody
I would suggest that you urge your niece to ask her doctor for the source of any evidence of genetic defects associated with talipes. I am sure that you are perfectly aware that the talipes itself is a very correctable condition.
I do wish all goes well with your niece.
Tom Clark

Date:    15 August 1999
From:   Tracey and Dave Parr  <parr.daveandtracey@xtra.co.nz>

Hi!! We have a nine month old due for bilateral surgery August 23rd, and were wondering if anyone had any tips or information that they wished they had know before the surgery that they could share with us.We'd especially appreciate any suggestions on how to survive the following 12 weeks of plasters with a rather active and inquisitive little boy!!
Thank you very much for providing such an excellent website.
Tracey and Dave Parr
Christchurch, New Zealand

Hi Tracey and Dave
We wished we had known more about pain relief and better ways of comforting our Phoebe at 7 and 8 months. We were ringing up the hospital in the middle of the night and fortunately they were able to give us advice on how we could safely give her stronger dosages and more frequent dosages.
We also put her in the pram at night so that we could walk the pram up and down the corridor until the pain relief could get her to sleep. If we were doing it all over again I would put her into our bed for those 2 or 3 nights after coming home. For both our girls we have found that sleeping next to us when they are under any discomfort or distress has proven to have the most calming and comforting effect.
As for surviving the plasters. I would not worry. Plasters did not seem to bother Phoebe at all and she could get around and do all her normal things without any trouble. Bathing is the only difficulty. We used plastic bags but we now know that condoms are the best way of keeping the plasters dry. Just be careful they do not get too tight around the leg. So it is better to keep the bathtime short.
Make sure you read Domenica's email on the TIPS Email page. Her Juliet was back to her old self the day after surgery! How lucky were they!
I hope all goes just as well with your boy.
Tom Clark

Date:    13 August 1999
From:    Domenica de Rosa  <d.derosa@ddrosa.demon.co.uk>

I thought I would send an update on Juliet's progress. When I last wrote, she was 8 months old and about to have an operation for left foot talipes. The operation went well. Of course it was difficult seeing her go through the operation but she was her old self again by the next day. The plaster cast didn't seem to bother her at all. I know all children (and all feet!) are different but I was very worried about the operation and I hope this might comfort parents in the same situation.
Juliet is now 15 months old and walking well. Her doctor does not want to see her again for nearly a year and she does not have to wear special shoes or splints. However, I would be grateful for any advice on activities for children who have gone through this treatment. She loves swimming and I take her when I can manage it (she has a twin brother so they can be a bit of a handful!). Any ideas welcome!
With thanks to everyone for their support. And thanks to you for this great site.
Domenica

Hi Domenica
Thanks for the update on Juliet's foot. It is so pleasing to hear that the operation went well and that Juliet was back to her old self the very next day! This is comforting news for parents who are on the verge of surgery for their little one.
We (my wife and I) have not sought out special activities for our Phoebe. We do take her swimming and that is something she really loves and she is very confident in the water. We have also installed a trampoline. I say 'installed' because we dug it into the ground. I believe the trampolining would be helping Phoebe by building up the leg muscles which are underdeveloped from the months of plaster casts.
If you get any other good ideas please let us know. I have heard that dancing has helped and we will probably consider this at some stage.
Tom

Date:    13 August 1999
From:    Melody Whybro  <lordwhybro@mail.one.net.au>

Hi Tom and everyone,
It has been a while since I wrote... I have some questions for all you grown up clubfooters:
Max (4.5 years, bilateral talipes, corrected by surgery 2x) has started to play football with our local junior AFL team (which is something to be thankful for in itself, that he can run and jump and kick) but I have noticed that he tends to run with his knees locked and slightly favouring his right foot (which is the one that has always been more severely clubbed, though not by much). Sometimes he runs "normally", so I know he can do it if he thinks about it. My questions are:

1. Do you think the rigid football boots are uncomfortable for him? and
2. Do you think I should see a physiotherapist about his running style at this stage, or just wait and see if he grows out of it with more practice?

Tom, please put my letter on the website and let me know what you think, too. By the way, I am no longer working at Parents mag so I've lost access to that wonderful medical library...
Thanks, and I hope you and your family are well,
Melody

Hi Melody
I will have your email on the TIPS website by tomorrow and I hope there are some grown-up club footers who can help with your questions.
What comes immediately to my mind when I consider your questions is the podriatrist that Phoebe and I have been seeing. He looks so closely at the the way we walk, examining the movement of hips, knees and the angle at which the foot strikes the ground and he designs orthotics which fit inside our shoes and they help to correct or compensate for imbalances in our walking action.
I would definitely recommend that you seek an opinion from a podriatrist on Max's running action.
I am glad you have kept some interest in TIPS and even though you do not have access to the Parents medical library I am sure you must have a vast knowledge of childhood problems that we may be able to draw upon.
I hope you are able to get some help for Max. Please let us know sometime.
Thanks for keeping in touch.
Tom

Date:    12 August 1999
From:    Rob & Nadia Fry  <rjfry@ozemail.com.au>

Dear Sir/Madam,
Let us introduce ourselves. We are Rob and Nadia Fry. We have 3 children, Jessica (3 1/2 years old), Melanie (2 years old) and Matthew (3 1/2 mths old). Matthew was diagnosed as possibly having talipes at the 19 week ultrasound, this was later confirmed at a second ultrasound at about 28 weeks. He ultimately was born with what was described as a medium talipes deformity of the right foot.
At 4 days of age his leg was encased in plaster to correct the problem and at that stage it was suggested that this would be the only treatment required. The plaster treatment continued weekly and then every 2nd week thereafter. After 10 weeks his foot had shown tremendous improvement and he was then placed in an AVO splint. It was at this stage he was able to enjoy a real bath (sponge baths proved to be timely and not very enjoyable). We all thought it was great and Matthew loved it.
Today we have just taken Matthew for his first visit since being fitted with the splint and to discuss what the necessary next stage of his treatment would be. He has been in a splint for 4 weeks ( 24 hrs a day -except bathing) and we were hoping to hear that he would have these hours reduced and be able to have some enjoyment splint free. We were surprisingly told that the correction achieved by the plastering had regressed and he has no up or down movement of his foot and his heel bone has not dropped into its correct position. The Doctor now seems to think that the deformity is worse than first anticipated and that Matthew will require an operation to surgically correct his foot.
We are devastated that it has come to this after such a positive initial prognosis. It is more a fear of the unknown than anything else and also a worry that the operation is really necessary? Should we get a second opinion? Are there any other alternatives to consider? We are not really sure where to start, if infact there is a start or is the suggested course of action the only possible way to go.
I guess what we are really looking for is whether your organisation is in a position to provide advice on hospital reputation or information on the competency or experience levels of the doctors or other staff involved in the process. Can you compare one hospital to another (or more precisely should treatment be sought from the Royal Childrens Hospital or are other public hospitals with resident orthopedic surgeons just as good).
I know at the end of the day the decision rests with us, but it is very difficult to make this decision right at this moment. I hope you can help, if only to offer some reassurance and comfort.
Thank You
Rob & Nadia Fry

Hi Rob and Nadia
From the emails TIPS has received I am aware of other non surgical methods in the USA, UK and France where they have reported success in treating moderately servere cases of talipes.
However in all the correspondence we have received in Australia there has always been surgery invoIved where the talipes was servere or moderately servere. I can well understand how devastating this thought of surgery must be to you. My wife and I became reconciled to the need for such surgery when we realised how effective are such operations and how this surgery is more "gentle" than methods used at the time I was born where ligaments were stretched in a series of many 'operations'.
At many of the TIPS social gatherings (in Melbourne) I have heard parents talk about their experiences at particular hospitals. There have been very good reports about the doctors at the Royal Childrens and my wife and I are extremely happy with the orthopaedic surgeons we have encounted at the Monash Medical Centre. With the TIPS Email Correspondence there has been very little mention of particular hospitals or surgeons. I guess this is indicative of the global nature of websites.
The orthopaedics are in the best position to know what is best and we do need to put alot of faith in what they do.
I can assure that our Phoebe recovered from the whole ordeal remarkably quickly and I do not believe she has any memory of it.
My best advice is to keep reading all the stories you can so that you know and are prepared for what may happen. Don't dwell on the cases where there are complications, just hope and pray you get the best results for Matthew.
I hope you make a good decision for Matthew and that everything goes well.
Tom Clark

Date:    28 July 1999
From:    Jean  <sexy0ne@talk21.com>

I am the stepmother of Shannon, a 21 month old girl with bilateral talipes. My husband and I have two children ourselves, who were both born with no problems (thank God!) The eldest James is seven, the youngest Patrick is just 4 months.
Shannon was the result of a one night stand, he was told by the mother that she was pregnant and it was his child. He never questioned this and we decided that we would love her no matter what. The mother was only 17 at the time and already had a three year old to someone else, who was also born normal. I know there is often no reason for a child to be born with talipes, it just happens. All the information on this site has really helped my husband and I as we knew nothing about talipes before Shannon was born.
We have Shannon every weekend and have been able to understand that treatment of severe talipes takes time, and there are no miracle cures. She can crawl but is not yet walking, she has had several castings and a tendon release operation. She has now been referred to a specialist Childrens Hospital for another operation and Lisaro frame to lengthen the leg. I just hope she can walk before our 4 month old does. She is not trying to stand yet and gets around quite happily on all fours. She is such a happy child and a pleasure to look after. However I need some advice on what kind of activities we can do that she may enjoy. We take her swimming when she has no casts on, and take her to parks and playcentres, but what can we do when she gets her casts or frame back? How can we make her safe in the car as with casts she doesn’t fit? Also is it unusual for her not to attempt to walk at this age? Are there any creams or oils I can use on the scar, to help it become more supple and help the healing? If anyone can help us we would be pleased to hear from you. We have tried talking to Shannon’s mother, however things are tense and nerves are still raw! Are there any other second families out there?
Jean and John.

Hi Jean and John
It is wonderful to read that you have both decided to love Shannon no matter what.   From my limited experience and reading about talipes children, I do not think you should be worried about Shannon not walking yet.   She is getting around happily and any vigorous attempts to get her walking may add some stress to her life that she is far better without.  I think it is great that you take her swimming. Our Phoebe really loved swimming and it was especially good for her in those months before she started to walk.  So I would strongly encourage lots of swimming and otherwise I would encourage her into all the normal activities for her age that she is capable of.
I cannot help you with any advice on creams or oils for healing.  However I am sure that your email will be read with interest by many parents 'out there' and hopefully you will get some other suggestions. 
Thank you for being in touch with TIPS
Tom Clark

Date:    27 July 1999
From:    Matt Ward <www.steps-charity.org.uk>

Dear Susan
I have just read your email (on 'TIPS', 3 July) regarding life with your "corrected clubfoot" and felt compelled to reply. I too have a so called corrected clubfoot and I'm a 26 year old adult. I find it interesting that you suffer from problems as a result of having the inequality in sizes. I suffered problems as a teenager, similar to those that you describe, but now providing I wear an ankle boot as opposed to normal shoes problems are few and far between. After 4 surgical operations the affected foot is 3 sizes smaller than the other and it doesn't bend at the ankle so by wearing a boot type shoe the support at the ankle and the gap at the end of the shoe aids my walking. Sure careers are limited; the police force is out and so would a stint in the army, but as it happens I've chosen a career that encourages me to do what I like doing best, sitting down! And were it not for my foot I don't feel that I would have the empathy or the aptitude to work for a National Children's Charity like STEPS. As for the long term for adult clubfooters like you and me, I think Tom has hit the nail on the head with podiatrists. A good podiatrist should be able to assess how best to treat the inequalities.
I find it most frustrating (likewise do my colleagues) that Talipes is treated in childhood with little consideration or follow-up as the individual grows up. Back pain and arthritis may pop-up but will likely be treated in isolation, and with no reference, to talipes - mainly because the medical profession and the individual assume it was 'corrected' at birth.
STEPS is in the thinking stages of a campaign to introduce Personal Medical cards in the UK that stays with a child throughout their lives. When they are 25, for example, and a talipes connected problem arises the card will describe in detail to the individual and the health professional what treatment previously took place at childhood. I work in a charity that has a library of information and staff that have years of experience with treating the condition yet I cannot discover exactly what strapping I had or what operations were performed. My parents can only remember so much and my scars tell very little - and I am sure there are many thousands just like me.
Life goes on but my best friend of 15 years still calls me Peg-Leg!!!
Regards
Matt Ward
STEPS National Office 

Thanks Matt for forwarding this copy of your reply to Susan Workman.  I do appreciate knowing your own background of  a clubfoot and the obvious empathy it must impart in your involvement with STEPS.
Tom

Date:    24 July 1999
From:    Debra Preston <dlpresto@email.uncc.edu>

I am 29 years old and was born with bilateral clubfeet and a muscular problem. I saw my first orthopaedic doctor at the age of two weeks old and had my first surgery at 2 months old. Since I have had five surgeries to lengthen my hill-cords and one to transplant my calf muscles. I just gave birth to my second daughter who although has not been fully diagnosed with, but I firmly believe has one clubfoot. My oldest daughter is now eight years old with completely beautiful feet and legs. Although I am a sufferer of this deformity, I was still very distraught at the idea of my new born baby having the same affliction.
But I have survived well. I have complete movement of both my feet and legs, both feet are the same size and thank the Lord I CAN WALK FINE, which I learned to do while wearing a rocker bar. The only down side is that I have extremely small ankles and calves. I had excellent doctors from the Miller Clinic in Charlotte, NC. Unfortunately both of my doctors are deceased but I thank them every day for what they gave me.
My mother also suffers from one clubfoot. She has no movement in her leg below the knee. They had to stop the growth in her "good" leg when she was a teenager because her clubfoot leg quit growing. She also wears two sizes of shoes, one foot is a size 4 and the other is a size 6. So you can see how technology has grown since 1939 when she was born. Lets all be grateful we are and our children have that on their side and are otherwise healthy. It doesn't bother me anymore but society is a cruel place. Please let your children know they are beautiful people and give them the confidence in themselves so that ridiculing people in this world will not bother them. This world can be an ugly place for people who are different, but my theory is that it took God longer to make me and my precious Caitlyn special!!!! (as well as all of your children) So please instill in the minds and hearts of everyone you know that we all have feelings and they are better unhurt.

Thanks Debra for giving us some of your family's experiences of  clubfeet.    I remember suffering  much ridicule, especially in those first years at school.  I was extremely uncoordinated in my walking and running due to a clubfoot at birth.  I certainly hope to be able instill in my 2 daughters that all people are beautiful people and do not deserve any ridicule.
Tom

Date:    24 July 1999
From:    Judy & Anton   <mafonseka@one.net.au>

Dear Tom,
We wrote to you a while back when we found out that our baby will be born with bilateral Talipes. I gave birth to a sweet little baby boy on the 18th of June 1999. We have named him Jehan. Even though we were hoping for a miracle, Jehan was born with Bilateral Talipes. His first plaster casts were done a week later, below the knees. I just wanted to advise any new parents to suggest to their surgeon that they put the casts above the knees. Jehan developed blisters under his knees because of the rubbing of the plasters. Ever since then the surgeon has put the plasters above his knees and this seems a little better.
We are still learning how to take the plasters off, and each time we do it we learn something new. Since it is winter in Melbourne now we keep Jehan's singlet on when we put him in the bath to soak the plasters off. Of course we first make sure that his tummy is full, so that he is happy to be sitting in the bath for half an hour or so.
Jehan has already had four plaster casts. We see a huge improvement each time. Thank God. Our Surgeon has advised us that he will repeat the plasters for at least three months and then decide if Jehan needs surgery.
We will keep you updated on Jehan's progress. Thank you TIPS for all your help.
Judy & Anton Fonseka

Dear Judy & Anton
I am sorry for not getting back to you sooner.  I have had to let my attention to TIPS email drop over the last couple of weeks with a series of winter colds and flu which has gone right through our family.
Congratulations on the birth of Jehan!  You have reminded me of the frustration we had in "soaking" those first plasters off in the bath.  We thought (because we were told by the doctor) that the plasters  would just fall off and we waited and waited for over an hour.  So you are doing well to get it done in half an hour already.
I am glad to hear that you will keep us updated on Jehan's progress.  Jehan is a great name.
Tom

Date:     23 July 1999
From:     "Anna Dichmont" <anna@dichmont.freeserve.co.uk>

Hi Tom
Thanks for all your reassurance about Matilda. You were absolutely right - they all develop at their own pace and we wanted to tell you that Matilda took her first proper steps today -a little wobbly perhaps but completely unaided! It has been so great to read all your advice to parents, especially when there have been problems, and we wanted to share some good news. Of course it is early days yet, but so far our story has been very positive and maybe this will reassure other parents who are feeling anxious.
With best wishes to you and your family
Anna, Alex and Matilda

Hi Anna and Alex
I am sorry for not getting back to you sooner.  I have had to let my attention to TIPS email drop over the last couple of weeks with a series of winter colds and flu which has gone right through our family.
Thanks for letting us know the good news of Matilda's first steps.  It is such a marvellous milestone.  I could not forget those moments with both my girls, and especially for Phoebe whose feet have been such a concern for us.  It is good to hear that you are feeling so positive about Matilda.  It will make such a difference to the attitude she will adopt towards her own feet.
Enjoy those feet, happily walking!
Tom

Date:     11 July 1999
From:    Annette Holian <annetteholian@hotmail.com>

Dear Tom , Thanks for your support.  The donations of splints, shoes etc , can be sent direct to:
"Senta Bilong Helpim" C/- Bro. James Coucher, PO Box 248, Vanimo, PNG.
This will be the best way to ensure that they arrive . I could collect up some splints in Melbourne but I would encourage use of the postal service. Our last container shipment of 30 boxes, 12 months ago hasn't actually arrived yet. Missing in action, you might say. Best wishes, Annette

Date:     8 July 1999
From:    Annette Holian <annetteholian@hotmail.com>

Dear Tom ,Thanks for your reply. I am hoping to get the airfares reduced by the airlines. I will get a formal costing on the essential tools and see if we can get the most necessary items first for this trip. Hopefully the instrument companies will help by a giving a special price too. If anyone has old corrective shoes, bars or splints around that are no longer needed, these could also be recycled. Best wishes and thanks for your help. Annette

Hi Annette
We have 3 sets of splints and denis browne boots which we were keeping for Phoebe as 'souvenirs'.  However we have decided that it is far better for them to be recycled to help the plight of those children in PNG.  I am sure we can persuade many more parents to do the same.  Tom

Date:     8 July 1999
From:     "Anna Dichmont" <anna@dichmont.freeserve.co.uk>

I am 34 years old living with a " corrected clubfoot". I would like to know if there are any adults out there with a corrected clubfoot, and what their current lifestyle is like. Everything I read and have been told is a child can live a normal life after the clubfoot is corrected. But what about adult life? Although doctors tell me my foot looks great and x-rays show no signs of arthritis, I live in pain everyday. Because my foot is one inch shorter, my body as a whole is off on one side, one inch. This creates back pain, neck pain, migraines, and at times extreme foot pain. This isn't my complaint, I am thankful for all that has been done for me, but I feel if my parents had been told this is a life long maintenance, I wouldn't have the problems I have. Are parents out there being told their child should wear corrective or lifted shoes for the rest of their lives? And what about walking barefoot? My parents were told, " Her foot is corrected, go live a normal life." But as an adult I live a restricted life, because as a child I lived a normal life. If there are any adults out there, please tell me how your physical well being is.
Susan Workman

Date:     24 June 1999
From:    "Dr W B Maxwell" <benmaxwell@doctors.org.uk>

Date:     15 June 1999
From:    Martin Egbert <martinegbert@earthlink.net>

I have the book "Things Change" by Troy Aikman (1995) - Dallas Cowboys quarterback where he describes having a mild form of clubfeet. Also I confirmed on a web site about him that Dudley Moore the actor/musician had clubfeet. I have also heard, but have not been able to confirm that Pat Summerall, sports announcer and Charles Woodson 1998 Heisman Trophy winner all had clubfoot.

Thanks Martin for contributing to our list of famous people.   I will do a little research on all the people you have mentioned to find out a bit more about them and hopefully find some photos.  They will appear on the TIPS website very soon.
Thanks again.
Tom Clark

Date:     9 June 1999
From:    KMedeiros@webtv.net (KARI MEDEIROS)

Troy Aikman of the NFL Dallas Cowboys was born with club feet. He actually learned to walk in his casts!
Kari

Thanks Kari
I have added Troy to the TIPS home page. Hopefully we will discover a lot more famous people born with club feet.
Thanks
Tom

Date:     7 June 1999
From:    "drummondclan" <drummondclan@flexi.net.au>

Dear Tom
Hello once again! I hope this finds you all well.
We are back from another trip to Brisbane to see Keara's Dr and the news is NO MORE DAY splints. She does still have to wear them at night. As you can imagine we are really pleased with the news.
She is a potential candidate for problems as her feet are still very tight so the Dr wants to keep a close eye on her, but we don't have to go back for another SIX months. Six months is the longest time we have ever had between visits, what will we do with ourselves?
Has anyone had any benefit from using a trampoline? We are going to get one for Keara's birthday next month and I just wondered what anyone else thought of them. I did ask the Dr today and he thinks it would be good for her.
I read with interest little Fatima's correspondance to keep up with her progress. Is her story on the website? I got the impression it was from reading e-mails but couldn't find it. Of course I regularly download the updated e-mails to read them all to see how others are progressing. It is amazing the enquiries that come from many and varied sources, not just the parents of Talipes children.
I had better go now. Just thought I would let you know how Keara is going.
Bye for now. Wendy, David, Keara and Tyler.

Hi Wendy and David
I can definitely imagine and relate to your news about "no more day splints". You must feel that Keara's feet are progressing when your visits are now six months apart.
It is interesting that you are considering a trampoline. We brought a trampoline and dug it into the ground when Phoebe was 2 and a half. She loves it and gets on it almost every day. We never really considered that it would be a benefit in straightening her feet. However I am sure that it helps muscles develop in her legs and hence give her a better gait.
Thanks for telling me that you read all the emails. It is good for me to know that it is worth putting all the TIPS correspondence on the website. I try to update the emails once a week but sometimes I miss a week. I am definitely behind with the emails this week.
Thanks again for Keara's update.
Tom

Date:   5 June 1999
From:   Jennifer and Raymond <r.o.n.antiques@cwcom.net>

Dear Tips,
My son Benjamin is waiting his first operation in August when he will be 6 months old, this is Ben. Can I e-mail you again with his progress when he has his operation?
Jenny Norman.
Picture Attachments:

Hi Jenny
Please tell us more about Ben and definitely keep us informed of his progress after the operation.
You have a gorgeous ‘bub’.
Thanks for finding and getting in touch with TIPS.
Tom Clark

Date:    3 June 1999
From:   "Leo Delgado" <LALI@msn.com.au>

Tom
After a somewhat lengthy absence from the "keyboard" I write to you with news on Mikaila. Mikaila is now 12 months old and is crawling and standing ( by holding onto furniture etc). I think when I last wrote to you she was 9 months and as yet had not commenced crawling. Her feet although still maintaining correction do have their problems. Her right foot ( the least severe prior to surgery) , now looks as if it has been over corrected. When Mikaila stands she seems to be standing with the inside of her right ankle. Her left foot ( most severe prior to surgery) still tends to "banana in". We are not sure whether it is her foot that if bending in or whether it is caused by Mikaila's other problem. I think I wrote to you when Mikaila was just 6 months and had been diagnosed with low muscle tone. This still seems to be prevalent. When she stands, she "wobbles" and is not able to stand for long periods of time. She stands on her right foot initially and then "drags" her left foot into position. She has very thin and "lax" calves. Our Paediatrician advised that it ( the low muscles tone) is associated with either a nerve problem or a problem with these muscles not developing properly. No one is sure whether this is associated with Talipes and Mikaila's time in plasters. We now need to undertake a few test with a Neuro to establish whether it is a nerve problem or a muscular one.
Through my readings on the TIPS site and others I have not come across a similar case of either low muscle tone or over correction after surgery. Do you know of any ?
Meanwhile we continue applying nightly AFO's on Mikaila. She is such a sweet little girl, never complains when we put these on her nor does she ever try to take them off. She knows that it is all part of the routine.
Tom it would be inconsiderate of me if I did not ask how Phoebe was progressing, my wife and I would be most interested in hearing from you.
Wishing you and your family the very best.
Leo Leanne & Mikaila

Hi Leo and Leanne
It was good to hear about Mikaila again.
I have certainly not heard of any other cases of low muscle tone and talipes. This of course if not to say that there is or there is not any association with Talipes.
It is amazing how well our little ones accept their plasters and AFO’s. I guess for Mikaila (and Phoebe) they are just a normal part of life.
Phoebe is nearly four and we have been seeing a podiatrist and now she is wearing orthotic inserts in her shoes. Phoebe is quite oblivious to any real problem with her feet. However, as parents, we wanted to try anything we could that could possibly help get those feet just that little bit straighter. It was easy for our orthopaedic to say that "lots of children are pigeoned toed far worse than Phoebe". However she is not his daughter and you always want something better for your own.
Other than these concerns with her feet, Phoebe and our other daughter Ella are giving us immense happiness and I love spending all the time I can with them.
Thanks for keeping in touch and keeping us informed about Mikaila. I will update her page on the TIPS website.
Tom

Date:    3 June 1999
From:   Babul Bhatt <babulbhatt@hotmail.com>

Hi,
My newborn girl "Anoushka" was born on 1st June 1999 with Talipes Equinovarus. What are the chances that she will walk normally ? I am living in Singapore. Can I know who is the best doctors around in Asia Pacific region. I am willing to travel for the treatment. But me and my wife work in Singapore, both as Computer Engineers. We are originally from India - Bombay. I would like to contact a Specialist who deals with such cases and discuss out the chances of her walking normally. I am willing to spend all I have for my girl.
Thanking you in anticipation.
Regards
Babul D. Bhatt

Hi Babul
With proper treatment you can be sure that your little Anoushka will walk normally. Talipes is a very correctable condition. I am sure there would be orthopaedic specialist doctors in Singapore who would be able to treat your girl.
However your email on the TIPS website may attract the attention of others in the Asia Pacific region who may be able to advise of very good doctors or hospitals where Talipes is treated.
I hope you find suitable treatment for Anoushka and her feet are corrected without too much distress. I hope it a all goes well.
Tom Clark

Date:    3 June 1999
From:   "ALEEM ARSHAD NIAZI" <aleem_niazi@hotmail.com>

Dear Tom and Beata,
With hope to find all of you in good health. Fatima had her last castings after surgery on first June 1999. Now the doctor has applied very light plasters, as according to him there is no need of any heavy plasters. He is satisfied with the progress after surgery. And on 16th June we will go to doctor for removal of these last castings. The doctor has told us on that day he will give us further instructions after final assessment of the feet. Tom what you think about these instructions would be? We have no idea about this. Please let us know the common things we have to keep in mind so that we are mentally prepared before going to doctor on June 16. Fatima is now slowly gaining confidence and she is not terrified and frightened as she had been during last six months. We now take her out in pram and try our best to keep her happy. It was not possible before because of heavy castings to lay her down in pram.
Sometimes Saad is irritating as we all take care of Fatima. But this is short period and all will be OK in couple of days. We are lucky that my elder brother and his family also lives with me. He has two children who after their home work play with Saad. It is nice to live in a joint family system as it is very common here in Pakistan.
How is your family? Our special love for beloved daughters and best wishes for Beata.
With all our best wishes.
Yours,
Aleem and Tahmina

Dear Aleem and Tahmina
Your news is good and getting better with every message from you.
I could not guess what instructions your doctor is likely to give you. But from our experience with Phoebe and with most other cases you can be fairly confident that, after surgery, everything will become easier for you. Fatima will probably wear some form of splints which can be removed for washing and they may only be worn at night once she is walking well.
Don’t be alarmed if her feet are not very straight. A lot more correction will take place from wearing splints and also when she is walking and running.
We are enjoying our girls more and more. Phoebe and Ella now play wonderfully together.
Best wishes to all your family
Tom

Thanks Jan for this bathing tip. I certainly wished we had thought or known about this when Phoebe was a baby. She loves her baths but she had very few when she was little.
Thanks
Tom

Date:    23 May 1999
From:   Cari Thompson <cari_denee@htcomp.net>

Hello, I live just outside of Ft. Worth, Tx and have a daughter with a club foot...she had surgery when she was one (now she is 7), but she is having some problems with her foot again and I would like to get your newsletter and hear about other kids that have club feet
Thanks,
Cari Thompson

Hi Cari
Thanks for your interest in our TIPS website. We do distribute a newsletter to parents in Australia which includes stories of children with talipes. However most of this goes onto the website. The rest is usually information about social events happening locally.
I am interested in hearing about the problems your daughter is having at 7 and what you are able to do to help her at this age.
You will be able to read many and varied stories of club feet on our website and I hope they can be of some help.
Tom Clark

Date:    21 May 1999
From:   "ALEEM ARSHAD NIAZI" <aleem_niazi@hotmail.com>

Dear Tom, Beata and cute daughters,
With hope to find all of you in good health. The photos are on the web and all of us are delighted. It is a message for the whole world who cares for the deserved persons. I think we had never been on the net and fresh looking without TIPS and specially you, Tom and your family. People must realise how important is for a grieved family like us if not supported at this stage, what would have happened? May be for millions living do not realise about the social support to the needy ones. It has changed our views also. We are now more concerned of the social values than before. No one has taken any thing from this world when he dies. Every thing will be left here. For this short period (may be 70 or more years) we only live for ourselves. Only those are great who live for others.
I am sure with the grace of God almighty and all your prayers, Fatima will be all OK in very near future. It is just matter of one month. We will be able to see Fatima with corrected feet on web in the last week of June.
Will you please send me your family photos?
With all our best wishes and love to our daughters.
Your brother,
Aleem

Hi Aleem and family
Our girls are cute and getting more so everyday!
It is good to know how much you have appreciated the support and exposure that TIPS has given to Fatima. Thank you for such warm comments.
I do not have any pictures of my family (apart from Phoebe) on our site. So, thanks to your interest, I will choose a couple of photos and scan them and hopefully they will appear on Phoebe's page within the next week.
Take care of all your family
Tom

Date:    21 May 1999
From:   "Melissa D. Braddock" <braddockm@uthscsa.edu>

Hi, I'd like to share our story and some tips that might comfort other families dealing with club foot. I was 20 weeks pregnant when my prenatal sonogram showed both feet to be clubbed. My OB sent me to a genetic specialist to rule out possible chromosome problems. I did not know at the time I had a maternal uncle born with talipes. The aminio (the waiting period was cruel) showed everything to be normal. I searched for information on club foot. I ended up at our medical school's library reading medical books with terms that scared me. I wish I knew about this website then. I really had no worries. I was told by the doctors (OB, genetic specialist, pediatrician) that talipes was very common and correctable.
It was the minute she was born that really hit me. I did not want anyone (other than professionals) to see her feet. I was not going to satisfy ignorant people's (including family and friends) curiosity. I was not ashamed of her feet at all. Just the annoyance of ignorant others.
She was casted the next morning; wore them for 6 weeks (changed weekly) until the doctor decided she needed surgery. The casts were a plus with the day care. She got special attention (more liked spoiled rotten).
We planned surgery at 7 months. Poor baby was diagnosed with asthma around that time and had an episode so we has to post pone. Next schedule was at 9 months - again asthma episode. She finally had surgery last January. We had to do it twice. The first was her right foot. The doctor found she was missing an ankle joint that moves the foot side to side. It took him long to find it. With her asthma history, he didn't want to keep her under too long. We went back two weeks later for the left foot. Same thing, only half the joint was missing.
Casts (plaster), up to the top of her thighs, were worn for 3 months (changed every month). The annoying ignorance came back. I got over the hiding of the feet part about a month after she was born. I think if I forgot about it, others didn't notice kind of thing. But I did not experience any cruel people (thinking I abused my child or something), just the curious ones. I refer to them as ignorant which is unkind of me, because a lot of the inquiring ones were very nice. I just got tired of repeating myself. I figured if people had to ask then they probably aren't smart enough to comprehend the medical reason so I played off my answer with, "She had surgery to correct her crooked feet." Then when your are in a crowd of people and they ask one by one, I wished they would just group together so I can say it once. Then if I was in a rotten mood, and someone clearly ignorant asking just to ask (a few encounters with young men probably without children of their own), I would say, "She wouldn't stop crying one day so I pushed her down the stairs." I would get a laugh with their reaction. I guess it is hard for me because I would not approach someone, in my situation, and ask them what people ask me.
A tip for bathing -- get a shower hose that attaches to the bathtub faucet. Buy small trash can bags. Put over each cast and tape (masking tape) as high above the cast as possible tightly around the leg. The shower hose makes it nice because you can rinse and move it away without it being direct or having the cast immerged in water.
We got out of casts May 4, 1999. She stared with the brace (shoes attached to 12" bar) at night. She had done great with them. The first night was rough, but soon after she figured out how to flip over. And a couple of times she has slipped one foot out of a shoe. We put them (my husband puts on shoes, I hold her in lap or lay with her on sofa) when she is ready for "night, night." She's been great. We are told we have to wear them for 3-4 months.
I am wondering when she might start walking. She will be 16 months at the end of this month, June. She tries to stand, but you can tell it is uncomfortable. How long does it usually take? I know every child is different.
I want to tell new parents to relax. It has been 16 months for us, but the time flew by. She was crawling and standing up on her feet prior to surgery. She probably would have started walking on the sides of her feet. She knew nothing to be wrong. She is our special angel. Through your child's strength you will get yours. The curious, ignorant friends/family members will get used to your child’s feet so don't let that get to you for long (if it does). Every non-curious person I have encountered that was either born with club foot, has a child born with club foot or has known someone with club foot has mentioned that the child was athletic. That is interesting with me, and gives me much reassurance. I heard Kristi Yamaguchi (the olympic gold metalist ice skater) was born with club foot. I don't know it to be true, but isn't that hopeful if it is. A friend of my sister recently told my sister that she had corrective surgery for talipes (in the early sixties). An old boyfriend that she lived with for 4 years (not too long ago) never knew. He never noticed scars. So what may seem devastating now, will clear up for you in no time.
Good luck!

Hi Melissa
I was delighted to read Cheyenne's story. It bought back lots of memories of how my wife and I felt with the questions and the looks from people in the street. Fortunately most of our family and friends were quite understanding and were more on the side of spoiling Phoebe with extra attention.
Anyway the story you have written will be excellent reading for new parents to club feet and I should have Cheyenne's Story as a new page on the TIPS website within the next 24 hours.
I am so glad you told me about Kristi Yamaguchi having club feet when she was born. I checked this up on the Net and I learnt alot about Kristi. I am quite inspired to try to find out other famous people. So I will put a special request on the TIPS home page.
About how long will it be before Cheyenne walks. It seemed a long time before Phoebe walked, at 18 months, and we believed that her club feet was the reason that she took longer than the average. But who knows, every child is different!
I hope you are happy to have Cheyenne's page on the Net and hopefully youwill be able to send us some updates and photos from time to time.
Tom

Date:    19 May 1999
From:   "ALEEM ARSHAD NIAZI" <aleem_niazi@hotmail.com>

Hello Tom,
How are you? It is hoped that ever body there is all OK. I have tried all my best to see Fatima's pictures but could not see the images. I do not know why I can not see that. Phoebe and others have the photos on web site. Please guide me what should I do? I use netscape navigator.
My son name is Saad and we are so much pleased that he has never bothered us in the past six months. How quickly he has realised the situation, we don’t know. He is a good boy who plays with his toys and all the time smiling. Sometimes when he is irritating when we both are busy with Fatima in cleaning and feeding. Fatima is having his mother feed. My spare time is spent with him and he is never ignored. May be due to this he has applied himself. You know how difficult it has been for both of us to pass through this situation.
With all our best wishes.
Your brother
Aleem

Hello Aleem, Tahmina, Saad and Fatima
I have had problems with our Internet Service Provider. Two nights ago I was uploading all the pages I had updated when suddenly I lost the connection and I have not been able to get connected again, until now. So my apology that the pictures did not get uploaded two days ago. However everything is fixed now. I have just uploaded again and checked that all is working.
It is very nice to hear about Saad. He seems to be about the same age as Phoebe and just like you we are enjoying Phoebe growing up, learning so much, nearly always happy and just delighting us in every way.
I hope you like Fatima's page on the TIPS website.
Take care and keep enjoying your family.
Tom

Date:    18 May 1999
From:   Melissa Magor  <magor@netyp.com.au>

My name is Melissa Magor and I am in year 12 in South Australia at Ardrossan Area School. I am doing child studies and as part of my course I have chosen to find out about club-feet, my choice is because I have a young nephew who is nearly two who was born with club-feet. Any information you could send me would be very much appreciated.
Thank You
Melissa Magor

Hello Melissa
Thanks for your interest in talipes and our TIPS website. Everything I have about talipes or club feet is on our website. We do circulate newsletters and brochures to hospitals and health centres but all the information in this printed material is actually on the website. There are some links which you could follow through and get much more information.
May I suggest that you look through some of the 'stories' and the emails on the TIPS website. Many of these give a very personal and moving insight into the impact that talipes has in the family life of those who have experienced someone with talipes. A few of these personal experiences would make your project more readable.
I hope our site can be helpful.
Tom Clark

Date:    16 May 1999
From:   "ALEEM ARSHAD NIAZI" <aleem_niazi@hotmail.com>

Dear Tom and Beata,
With hope to find all of you in good health. Fatima had her second plasters change today. She is doing well and doctor says that only one more plaster on 1st June will be applied and they will be changed on 19th June. That day 19th June will also come and by the grace of God and all your support, we will be able to see the miracle. This is the first case in our whole family that is why every body is so concerned. We have not asked yet from the doctor as she will need splints or not. Neither he has given any hint about this. What you say about this whether to ask him or not? I have seen the tips web site many times which helped me a lot in all this process. But no Fatima pictures still on the web?
Pay my best wishes to all your family and friends.
Your brother,
Aleem

Hello Aleem
Your pictures are finally on the TIPS website. It is good to be able to see all your family and to see how Fatima's feet looked before the surgery. The photos have made me realise that I have not asked about your boy. I do not even know his name. How is he with your Fatima?
I would not be concerned about the splints until you know how Fatima's feet look when the plasters come off. I am sure your doctor would not be making any decisions until then as well.
We will also be very interested to learn how good her feet are. Our best wishes to all your family.
Tom

Date:    13 May 1999
From:   Bob Evans  <headteacher@osmotherleyschool.freeserve.co.uk>

Sirs,
Having looked through the information available on the Internet - even if rather hastily - I would like to find out a little more.
My interest is from an educational point of view. I am the head of a primary school where we have a child who has bilateral talipes. A sequence of operations has corrected much of the problem, but my question relates to another aspect, namely - are there any (known) related mental problems or disorders which have any association with this complaint. Could these problems (should they exist) have any effect on a child's learning potential at school?
I look forward to reading your reply,
Yours faithfully,
Bob Evans

Hi Bob
I was born with talipes so I have had an interest in this condition all my life and especailly now with my 3 year old daughter and I have always been of the belief that talipes does not occur with any other conditions. However recently (January and February) there was quite a discussion in the TIPS correspondence about other congenital disorders and talipes. I will include here the mail we received from Melody Whybro who is co-editor of a Parents magazine and also the mother of a talipes child:

Just some info about other genetic disorders related to talipes. I was quite alarmed to hear that talipes was linked to Spina Bifida, until I did some more research and found that the talipes of spina bifida kids is caused by their spina bifida, and it is not true congenital talipes such as our kids have.
I have never heard of talipes being linked to Down syndrome (none of the medical texts at work mention it and, believe me, I've read every word relating to talipes!) but this might be a matter of confusion since the 'triple test' looks for both Spina bifida and Down syndrome as well as other congenital abnormalities.
I would like to encourage everyone to ask their own doctors these questions and keep asking questions until they are satisfied. We are very fortunate to have an orthopedic surgeon who answers us honestly and patiently and I hope others have too.
Melody

This is the best information I have come across on this issue of "other" effects. I hope this has been of some help to you.
Tom Clark

Date:    12 May 1999
From:   Kari Medeiros  KMedeiros@webtv.net

Its been awhile since I have emailed you. Since the last time I wrote our son Michael has had his surgery in 3 steps. He has 24 more days until the casts come off! He has done quite well since the initial surgery almost 3 months ago, though we are very anxious to see those feet! My question now is, how long did it take your daughter to get over the initial shock of not having casts on her legs? The doctor told us that he would be a little sensitive for awhile. Were you able to put shoes on her right away? He is going to have braces that fit right inside his shoes also.
I am anxious to hear your reply!
Kari

Hello again Kari
It is good to hear that Michael is going quite well after his surgery. You would indeed be looking forward to seeing those feet.
I don't think I can give a satisfactory answer to your question this time. Phoebe came out of her plasters after the surgery at about 9 months but she did not walk until she was 18 months. So we did not put any shoes on her feet for a long time after the plasters. She went straight into splints (plastic moulded braces) after the plasters. When she did start walking she only had the splints on at night. She has never liked wearing shoes and she hardly ever wears shoes at home even in our cold mountain climate. She also protests strongly if she has to walk any distance. I could say that 3 years of plasters, splints and denis browne boots have probably given her sensitive feet but then again I think that every pre-school child would prefer to walk around in bare feet.
I am sure your little Michael will manage his shoes even with the braces. He might protest but at this young age he would be so adaptable and able to accept this as normal.
I do hope his feet look nice and straight soon.
Tom

Date:    3 May 1999
From:   "ALEEM ARSHAD NIAZI" <aleem_niazi@hotmail.com>

Date:    2 May 1999
From:   "ALEEM ARSHAD NIAZI" <aleem_niazi@hotmail.com>

Dear Tom and Beata,
As I had told you that on 1st May we will be going to doctor for first change of plasters after surgery. With the grace of God Almighty and all your prayers, she is feeling very good and results are OK. The castings are not hard this time. Stitches have been removed and there are no medicines prescribed this time. We have to go for another plasters after fifteen days.
Doctor is hopeful that she may take one or two more plasters. And then all is going to be OK. Doctor has not yet advised if Fatima will have splints. Are splints always needed or in some cases it is not necessary?
Best wishes to all of you.
Your brother
Aleem

Dear Aleem
Your news is wonderful. It is so good to here that everything is going just as it should. Whether Fatima will go into splints or not will depend on how severe the club feet were and just how much the surgery has corrected her feet. The splints we used for Phoebe were easy to get on and off so she could have baths and go swimming and after a while she only needed them at night. So wearing splints is quite a relief after the plasters. Hopefully Fatima will not need splints, but if she does it does not provide much of a problem.
Our best wishes to you and your family
Tom

Date:    29 April 1999
From:   "ALEEM ARSHAD NIAZI" <aleem_niazi@hotmail.com>

Dear Tom and Family,
With hope to find all of you in great health. We have just arrived after meeting parents in home town. I have mailed some photos of Fatima before and after surgery. In some photos you will see my son, wife and myself. I think it is better to keep family photos and post only Fatima's on net. What do you think?
We have an appointment with the doctor on 1st May at 17.00 PST. It will be first plaster change after surgery. Fatima was in pains in first twenty four hours as you had informed. After that she was OK. She is very good girl as she does not weep much and does not create any kind of trouble. The plasters are heavier than applied before. Many days after surgery she could not move her legs properly. Now she is happy and we believe that with the grace of God Almighty and your prayers, we will be happier very soon.
With all our best wishes;
Aleem and Tahmina

Date:    20 April 1999
From:   "ALEEM ARSHAD NIAZI" <aleem_niazi@hotmail.com>

Dear Tom,
At last we were through this tough time. We were there with all of prayers behind us and especially of you and Beata. As I had told you earlier surgery time was early in the morning. I am late in writing all this as I was too busy with Fatima's recovery. Operation was about
an hour which ended at 8.00 and from 8-15 to 14.30, it was very painfull. Fatima was in great pains and even all the efforts of doctors at one stage seemed very bleak. She was all the time crying which made us very concrned. Pain killer injections did not work at all. But after 14.30, suddenly she started sleeping. And with the intervals of thirty minutes she was sleeping. Doctor says the surgery is quite a success and we will go there for change of plasters after twelve days. At 20.00 we are at home. Fatima is sleeping and we are all very happy. This day, we were waiting for so long time, at last ended in great hopes. Thanks Tom and Beata. We will never forget each and every thing you have done in this regard. I have taken some photos and will be taking more. Just wait for couple of days and I will send it by mail.
Pray for Fatima in her future as we have to do a lot after surgery and
follow-ups.
Our best wishes to all of you.
Aleem and Tahmina

Dear Aleem
We are so pleased that the operation was successful.
It would have been very difficult to see Fatima in such pain. Nothing could have prepared you for this. However you can now hope that the worse is over and that her little are well on the way to being normal straight feet. The photos will be very welcome on the TIPS website.
Tom

Date:    15 April 1999
From:   "ALEEM ARSHAD NIAZI" <aleem_niazi@hotmail.com>

Dear Tom,
With hope to find all of you in great health. I received your  letter yesterday which gave us hope and courage to get an early appointment rather in the last week of April. I consulted the doctor who was kind enough to give operation date 19th April.   I am sure there are many more like you who will be praying for our beloved Fatima's successful operation. It will be 6.30 (PST) in morning as the doctor is busy and has to operate others too. We are anxiously waiting for that moment Tom. It will be a big event in our lives. Tahmina is in tears and very concerned. As she is mother who like others are little hearted. God may keep Fatima in His blessings all the time. The real test will be post surgical treatment care. As I had informed you earlier that this is the area where we are very much concerned. That is why we had decided to proceed to Australia for surgery. But we can not fight against our fate. God may keep us successful in this hard time. We are hoping for the best. Pray for Fatima as she needs only prayers at this time.
Pay my best regards to Beata and special love to your daughters.
Aleem

Dear Aleem and Tahmina
We will be praying and hoping that all goes well with Fatima's surgery on the 19th.
I know this is a very difficult time for you both. Because you love Fatima so much you will find the courage and strength to be there for her and give her all the comfort and love that you can.
With our love and prayers for Fatima and all your family
Tom and Beata

Date:    10 April 1999
From:   "ALEEM ARSHAD NIAZI" <aleem_niazi@hotmail.com>

Dear Tom
With hope to find all of you in good health. Today we went to hospital for Fatima's regular check up. X-rays were taken three dimensionally as were in past. Doctor says that she has not improved from her position as was before. He says that 20% children do not improve in the castings and our little Fatima is one of them as the tendons are very stiff. Today he has not done plasters to both of her feet. He has recommended that with in two to three weeks Fatima should get surgery.
I want to ask Tom "Is this surgery difficult? Will you please give me some idea about post surgical treatment plan? and how much time for healing and normality it takes after surgery?" and any additional information in this regard is most wel come.
Pay my regards to Beata and love for your daughters.
Aleem

Dear Aleem and Tahmina
I am so pleased that you are now ready for the surgery. It does more to correct clubfeet than any thing else so you will now be doing the best thing to help Fatima walk properly.
Is the surgery difficult? I found it difficult to see Phoebe when she regained consciousness after each operation. I know that she was sedated but there was much discomfort for the first 24 hours. Fortunately she slept though most of this time. Make sure you ask the doctors and hospital staff for the safe dosage of pain killing medication that you can give Fatima. You will want to have it ready if she is in great pain anytime during the first few days after the surgery.
About getting back to normality. We were very surprised indeed how quickly Phoebe was back to normal. The third day after surgery we only gave her medicine to help her sleep at night. At other times she was already starting to lift her plastered legs and crawl about. She was ready to get back to the normal things she does!
I should add that I have read many different accounts of the procedures and recovery from many different countries. So I would encourage you to read as many stories and emails as you can on the TIPS website so that you get the best picture of what to expect. There are accounts where everything has gone perfectly well and the child has experienced no problems and almost no pain to the more extreme cases where there have been lots of problems. You always hope and pray for the best results but I think it is wise to be prepared in case there are problems and what kinds of problems other children have experienced.
During the last week in April we will definitely be thinking and praying for a very successful operation for Fatima. If you can get photos to us, it will be great. But please don't go to any trouble or big expense. Please do whatever is easier for you; getting photos scanned by a friend or posting them to us. Our best regards to all your family who are very dear to us.
Tom

Date:    7 April 1999
From:   Scott Garrett   SGar101707@aol.com

My wife and I have a one month old girl, Ericka. Her right foot is clubbed. We get the weakly casts and remove them the evening before the new cast is put on. This has been hapening for only three weaks. When we removed this last cast it appeared that her toes were looking different. Most obvious is her largest toe. At birth it was the largest on that foot and now after three weeks it seems to be one of the smallest. It looks as if the cast is holding it back. Is this normal? Will her toes become all deformed? What good is a straight foot if the toes are messed up? Our orthopedist doesn't really answer our questions. If you could answer this question I would be most appreciative. Thank you.
Scott Garrett

Hi Scott
I have not heard of the toes being 'deformed' by the plaster.
I do know that the plaster can delay growth. It happened dramatically with with my right foot which was more than 2 sizes smaller than the left after 5 years of on again, off again plasters. This was almost fifty years ago. But the significant thing is that the right foot did catch up and within just a few years the feet were almost exactly the same size.
Without any medical knowledge, I would hazard a guess that Ericka's toes will turn out the way they are meant to turn out as determined by her genes. Of course they may be hampered and delayed by the plasters but that should not be permanent.
Hopefully you orthopaedic may give you better information some time or others reading this email might be able to offer some advice.
Definitely keep asking all the questions you can of your orthopaedic. I know how frustrating it is not to get satisfactory answers but you should be very persistent.
All the best for Ericka's treatment.
Tom Clark

My daughter is 13 years old. She was born with club foot. She had cast, surgery and brace shoes. She has knocked knees really bad and her feet still turn in. Her posture is always slumped over. She is very self conscious about it. Is there anything I can do now that she is 13 ?
Thanks
Melinda

Hello Melinda
Throughout all the email correspondence on this site I have not come across any examples of children around 13 who need something to be done because of the clubfeet. No doubt there are very many cases just like this and I will be hoping that others will reply to you once this email appears on the TIPS website.
I do hope you can find some means to help your daughter. I suppose I should mention that a podiatrist should be able to help by using inserts, orthotics, in her shoes which may be able to correct her posture and walking. I use orthotics in my shoes and they have helped immensely.
All the best in finding appropiate treatment.
Tom

Date:    4 April 1999
From:   Jennie Friend   <jennief@comcen.com.au>

Dear Tom,
Great news, Todd went in for surgery on 1st April, but it turned out that his bones HAD fused after all, so all that needed to be done was for the surgeon to take a look around, and remove the staple.(which by this stage was sticking out of the side of his foot and causing pain and limping). So thankfully no plaster, just crutches for a week or so until his foot is a little less sore. Hopefully no more surgery unless any other problems arise.
Yours sincerely,
Jennie Friend

Hi Jennie
It is great news and we hope there are no more problems. It must be such a good feeling to be at the end or hopefully near the end of treatment for clubfeet. We hope Todd is walking and running perfectly well very soon.
Tom

Date:    2 April 1999
From:   Holly Auster  hauster@amgen.com

Hello,
I am a mother of a two-year old girl "Haley" who will be going in in three weeks for bone-rotation surgery. I have been looking for a site like this for weeks. I read "Taylor's Story" and would like to contact the family. I would also like to subscribe to the newsletter and donate!
Thanks,
Holly Auster

Hello Holly
I have finally got in touch with Nadia North (Taylor's mum) and she is more than happy to be in contact with you. She now has an email address which is kymnadia@one.net.au
Thanks for the interest in our newsletters and in donating. TIPS has decided at this stage to distribute our newsletters in Australia only. The content of the newsletters is mostly taken from stories and emails on this website plus information about social events in local cities here in Australia.
I do hope that Nadia can be of some help to you.
Tom Clark

Date:    1 April 1999
From:   Matt Ward  "STEPS" <steps@itl.net>

Dear Tom (and all at TIPS)
The STEPS website is finally up on the net, though it is only a beta version, there are problems galore!
The address is www.btinternet.com/~stepsnational/ , once there the screen displays an index. Click on Default.Htm (home page) and explore away. Like I said, it is only a beta version I hope to enhance the quality of the images later and also fix any linking problems. Also, ignore the links page as I have even managed to get your web address wrong!
I hope you and your TIPS visitors find the site interesting - watch this space for vast improvements!!!
Regards
Matt Ward - STEPS Resource Centre Manager

Hi Matt
I have finally had a good chance to have a long look over your website. I am very jealous. You obviously have someone with great expertise in web design. It is very well organised and informative. If I ever get the time I would like to put lots of enhancement into our TIPS site. But for now I will definitely be alerting the TIPS visitors to your website.
Thanks for letting us know so promptly and also for putting in a link to TIPS.
All the best with your website.
Tom Clark

Date:    1 April 1999
From:   Indra Venkatbabu  indrav@hotmail.com 

Hello,
I am Indra Venkatbabu. I am basically from India. My husband is working in USA and we reside in northern part of California. After two years of marriage i was delighted to hear that i was pregnant in December. We decided to have the baby delivered in this country itself rather than having it in India. So we had seen a doctor and we had been visiting her every month.
On march 10th i had an AFP blood test which is done to identify the presence of any disorder in the child. The results had come fine. I had to go to India to complete my viva so i decided to go by 23rd march and return by may 4th. Before visiting India my doctor had advised me for an ultrasound scan. so I had my scan on march 20th. I was much thrilled to have this out because in india we do ultrasound scan but they do not tell us the sex of the child before delivery. so i was very happy to do the test here.
On 20th we had the scan done by another doctor (not the doctor whom we are visiting) and he said that the child had bilateral clubfoot. On his advice on the same day, we had a genetic councelling and the counseller told us that since AFP levels were very good so there would be nothing wrong with the child except for the foot. But just before the day i was to start to India i was called and informed that if i could take the amnio and one more test to do the fetal heart scan, it would be better. so i postponed my trip and on 23rd of march i had taken the amnio test and on 30th march i had one more scan to check the fetus heart.
yesterday after the scan the doctor asked me if i wanted to continue with the pregnancy? I am worried. Initially i was not sure whether to continue with the pregnancy or not. later i thought if the clubfoot is moderate then there would be cure for it. yesterday i had asked the doctor with the regard to the condition of the foot of the fetus and the doctor said it is SEVERELY BILATERAL CLUBFOOT.
Neither myself nor my husband have any family history of clubfoot. I am the first daughter-in-law of the family and this would be the first "grand child". I don't want the child to suffer throughout her life with disabled legs or feet with one big and one small or see her limping. i cannot imagine my child being made fun of by anyone either in her school or by the public. since it is only 20 weeks i want to abort the child. My husband is against it and he says if there is cure for the clubfoot (severe condition of the foot) we shall continue with the child.
meanwhile we want to go for one more scan, because in the three scans done on 20,23,30 march only during the first scan the doctor could see the legs of the child. in the other two scans the doctor could not see the legs due to the positioning of the baby. I don't know what to do: either continue with the child or not. Today i had seen your website and i wanted to have a suggestion. I know a child is God's gift but i don't want her to suffer throughout her life. If possible reply.
Bye
indra

Hello Indra
Here on the other side of the world I am in no position to advise you on what you should do.
However I will give you some of my thoughts on some of the issues you have raised. I have been in correspondence with several hundred parents of children with clubfeet and I find that it is not common for children born with clubfeet to have other genetic disorders. Also no one else has ever suggested they might abort their child because of clubfeet.
Clubfeet is regarded as a treatable condition. Many parents have expressed how relieved they are that their child has clubfeet rather than any other genetic disorder. It is normal for severe cases of clubfoot to require surgery and this produces remarkably good correction in the feet.
I can understand your concern about your child being made fun of. I was born with a very severe clubfoot on just one foot. That was nearly 50 years ago before benefits of surgery. I can remember being taunted in the very early years but before the end of my school years there was no noticeable difference in my feet. At school and for the next twenty years I played competitive basketball (I am very tall) so I do not consider that I have been hampered in my life by the clubfoot. These days the results from surgery produce even better results and usually in only a few years. Also remember that all children get made fun of for something or other.
I would encourage you to read all the stories on the TIPS website and the emails. You will find there is a vast range of experiences. I happen to believe that in the majority of cases the results of treatment are quite good. However it is important that you read about some of the more difficult cases so that you have a fair picture of what can happen.
I too believe that your child is God's gift to you.
Tom Clark

Hi,
Thank you for your immediate response.
I had a talk with my doctor two days ago and told her about aborting the child. She was really surprised and mocked at me saying that it is far too negligent matter to be considered for aborting. She also arranged for a scan with another specialist today. I had my scan just an hour ago. This is the first time i had seen the baby while scanning. all along only husband used to watch the screen but today i had watched the baby with the head, heart, small hands and good fingers holding in a "Thumbs up" fashion and the small legs too. It is indeed a bilateral club foot but i don't know how to judge the condition of the foot. I hope the feet will be cured even in the most severe condition. I had been looking the photos of other children and i hope my child will also be able to walk soon. Meanwhile my Amnio results are pending. I hope they would be available by next week and they would come out properly without any defect. I am planning to go to India as soon as things are normal. Today the doctor had told me to have another scan in the next ten weeks that would be in my 30th week of pregnancy. I hope things would move on smoothly. My regards to phoebe and Beata Clark. bye
Regards
indra

Date:    31 March 1999
From:   Anastasia  Pumpkin@megalink.net 

I am a mother of two, I was born with one clubfoot my second daughter has both. I am looking for support and info.The docter just told me Desarae needs surgery april 9th. I am really scared i dont remember much but i dont want her to suffer or be in pain. So any help would really HELP. Thank you for your time.

Hello Anastasia
I can really understand how you do not want your daughter to be in any pain. Desarae should not have to suffer if the doctors and the hospital provide you with adequate medication. It is certainly difficult to see your child after the surgery but she will be heavily sedated. While in hospital Desarae should be kept as comfortable as possible. We found the most difficult time was the first 24 hours back at home. The hospital provided us with paracetamol and advised us what was a safe and yet adequate dosage. However there were short periods where this was not adequate and after urgent requests the hospital did provide us with some codeine which they had been using on Phoebe before she left the hospital.
So my advice is that you talk with the doctors at the hospital and insist that they give you more than adequate medication to take home and that you are fully aware of what the safe dosages that you can give.
You should also find that it is only a matter of a couple of days that will cause you any concern and that Desarae should be back to her normal self very quickly.
I must also add that the surgery produces the most dramatic improvements in correcting club feet in the shortest possible time. If your doctor has advised surgery than I would not hesitate about. It is truly worthwhile.
I do hope that all goes well and that this time is not too distressing for you. I am sure that Desarae will forget all about the experience a long time before you do!
Tom Clark

Date:    22 March 1999
From:   Wendy and David Drummond  <drummondclan@flexi.net.au> 

Dear Tom,
Here is Keara's story. We are sending it as a word document. Let us know if you receive it OK, or if there is a problem. Thank you.
Sorry, but it has taken awhile to get organised.
Hope to hear from you soon,
Wendy and David.

Thanks Wendy and David for your great effort in putting Keara's story together and for the excellent photos.
What an ordeal you have had with the surgeries. I am very impressed with how active she is especially 24 hours after surgery!
Keara's story will definitely help other parents see that all the plasters, surgeries and AFO's really don't keep these little ones from being their normal active selves.
Keara's story is on the Net now and I am particularly grateful to have another photo of talipes feet at birth, so I have put this photo on the TIPS home page.
Please keep us updated on Keara's progress.
Tom

Date:    20 March 1999
From:    Nadia North  <kymnadia@one.net.au> 

Hi Tom & Beatta
just thought I'd drop a line and let you know we finally got a date for Taylor's bone graft op. We got a call friday 19.3 pm to go in wednesday 24.3. Will let you know how it goes. Has anyone else had bone grafts in the foot? If so, I'd be grateful for any feedback as we don't really know what to expect.
Bye for now. maybe we'll see you at the picnic
nadia

Hi Nadia
We hope all went well with Taylor's bone graft.
We will be at the picnic so it will be good to see you there.
Tom

Date:    6 March 1999
From:   Jennie Friend  <jennief@comcen.com.au>

Dear Tom,
Just a quick letter to tell you about Todd's progress. Not good news I'm afraid, about a month ago I noticed a lump forming on the outside of Todd's foot at the site of his bone fusion surgery. After a Doctor's visit , X Rays and a specialists visit, it now seems that the bones didn't fuse and have been moving and now the staple which was holding them together is coming out.
So as a result of all this, we are now faced with having the bone fusion surgery all over again. Todd is booked in for this surgery on the 1st of April, so I will let you know of any progress.
I must admit, I am normally a fairly positive person, however the thought of trying to keep an 8 year old boy happy throughout all the weeks of plaster , wheelchair and crutches is a little daunting.
I will keep you informed of any progress and keep up the good work, the website is great !!
Yours sincerely,
Jennie Friend

Here is A Prayer for the Children.   This puts it all into perspective!

Thanks Jennie for the update on Todd's progress. I dread the thought of further surgery on my daughter but to be faced with more surgery with your 8 year old must be very trying indeed. I hope it goes well.
Thanks for the Prayer for the Children. I will use it on the website. It may be another week before I can update the website but it will appear and Todd's Story will be updated.
Thanks for keeping us informed.
Tom

Date:    5 March 1999
From:   Mike and Denise Thomas  <zulut@iafrica.co.za>

Dear Tom and Beata
I tried to send you an email with a word perfect letter attatched last week, but it looks as if it did not get through. I'm a self-taught computer wizzard which is dangerous!!
Cameron had his first operation last week on the 24th of February. It lasted 3 hours and has been rather traumatic and remains so. Both Achilles tendons were cut to release his heels; the blood vessels had to be re-arranged and so did the bones in his feet. He was given a Cordial for anaesthitic and Panado Syrup and Stopane for pain relief. Both Denise and Cameron stayed overnight in hospital and were discharged the following day, Thursday. On Thursday evening he had a severe bout of runny tummy, no vommitting. We spoke to a paediatrician on Friday morning who said that it is the after effects of the anaesthic and all we could do was to administer panado every 3 hours or so.
It is now Friday a week later and he has severe Gastrow and is fed Electrolite solution, but is terribly grumpy and uncomfortable. He is not sleeping much, certainly not at night and it is being quite traumatic especially for Denise. We do not really know what to do next.
He is due back in hospital on Wednesday 10 th for his second op which will be to position his feet in the correctly and to replace the pins. I am wondering whether the pins in his feet at present are not the cause of his discomfort and stress? I remember reading one of your emails from somebody who had a similar problem with the pins.
Anyway we shall keep you posted and I am still trying to get some photo's on the net to send to you. Once again, many thanks for the wonderful facility that you provide for us to learn and share about Talipes
Kindest Regards to you and Phoebe
Mike, Denise, Matthew and CAMERON Thomas

Date:    3 March 1999
From:   Sandy   Skellypdg@aol.com

I am a 33 year mom of three beautiful daughters. I was born with both feet affected with clubfoot. My daughters were not affected at all. I really didn't know after all these years that my "condition" was called "clubfoot". Back in 1965 my doctor did not call it clubfoot, just a birth defect. After seeing a picture of children of clubfeet through the internet was I able to realize this is what is wrong with my feet. If you would like I could share my story, I believe it may be of some encouragement to new parents. I do not have corrected feet. The last time I saw an orthopedic surgeon they said I would be off my feet for at least 6 months and no guarantees of less pain or being able to look "normal". My feet are as flat as they could get them. Both ankles are on the same side of my foot (no inside ankle) with a very short wide foot and high arches.
If interested I could submit my story of how I dealt with this growing up and
how things are now.
Sandy

Yes Sandy we would like your story!
I would particularly be interested in how you dealt with clubfeet when growing up. It does seem so unusual that you have not had any correction. As you say your story will give encouragement to new parents. So thanks for getting in touch with TIPS and being so willing to contribute to our website.
Tom Clark

Date:    2 March 1999
From:   Dawn Duke   <duked@bethel-college.edu>

Some time last year I wrote you regarding amniocentesis and clubfeet.  I remember you asking me would l love the child any differently if he/she had problems.  I answered that no and refused the amnio.  I ended up going in the hospital for 2 months last July because my water broke at 28 weeks.  My son was still born 5 weeks premature, but quite healthy and with clubfeet.  Now he is 6 months old today.   He is having surgery on 3/22/99 to correct this since casts have not worked.   I really appreciate your support and advice you gave me back then.  I am attaching one of my son's recent pictures.
Tyler Ray Duke
Born: 9/1/98
           Nashville, Tennessee, USA
Time:  8:26 p.m.
Parents:  Freddie and Dawn Duke
Residence:  McKenzie, Tennessee, USA
Once again, THANK YOU!!

Thanks Dawn for getting in touch with us again and letting us know that everything worked out well. It is pleasing for us to know that we have been of some help when you were faced with a difficult decision.
They are great photos of Tyler, he is a lovely boy and his feet do not look too severe so the surgery should get his feet very straight.
We hope the surgery goes well.
Tom and Beata Clark

Date:    26, 27 February 1999
From:   Aleem Niazi  <aleem_niazi@hotmail.com>

Dear Tom,
You might be wondering how much time I have taken for this letter. It was also very painful month for us. Fatima had her last plasters on 16th January and now doctor has come back from USA and we were in hospital on 23rd February for check up. This is so strange and funny. As I had already told you there is something special happening to us. Now there were bruises on her right ankle and we will go to hospital after one week.
Doctor say surgery will surely be needed in late march. I had enquired from "widdison@cryptic.rch.unimelb.edu.au" and they have told me about ten weeks treatment with an approximate expenditures of A $ 9000.00. This is a very big amountfor me without travelling cost. I have asked from travellinmg agent who says for return ticket of my family from
pakistan to Melbourne, it will cost me about Rs; 200,000 or little less. It is not possible for me to arrange such huge amount. Boarding and lodging can be arranged in Melbourne as I had told you about my friend living over there.
Please guide me upto which extent you people can help me?
Best wishes for Phoebe and your wife.
Thanks
Aleem Niazi

Dear Tom,
Hello, how are you and all the family? I am fine here. Yesterday and the day before I mailed to you Fatima's appointment in Royal Children Hospital Melbourne. We have decided that we will proceed to Australia for her treatment. You might have recieved my correspondance record with RCH. As I had mailed this to you.
Within two days, this is my third letter. Please guide us what we should do now? We are not satisfied for the treatment she is having here in Pakistan. We can only proceed for visa processing untill you reply positively. We are hoping for the best from your end soon. Here I am again quoting the information provided by RCH Melbourne.

Cost: A$ 8900/- (excluding travelling cost )
Duration of stay: 10 weeks (approximate)

As I had written in second letter, cost of tickets from Islamabad-Melbourne-Islamabad, varies from airline to airline. You can check it from Qantas.(Me+Wife+Two years son+infant(Fatima))
God may keep all of you in peace.
Thanks
Aleem A. Niazi

Dear Aleem
I have just had 3 days away from work and my computer and I have only just received your 3 emails.
I am extremely surprised how much Fatima's treatment will cost in Australia for overseas patients. We had no idea it could be that much. We have offered to help you with Fatima's treatment with a donation towards the treatment. This will be very difficult for us and we are hoping to get help from others. I am very sorry that I have let you think that we could cover the cost of treatment in Australia. We just did not know how much it would be.
We, my wife and I, are still prepared to give a significant donation.
Before you finally decide where to get treatment for Fatima you should also consider another option. On the TIPS email page there is an email from Melanie Calloway in the US (dated 8 January 1999). She writes:
"The Shriner Hospital provides orthopedic and burn care for children up to age 18 at no cost to the patient. It is totally funded by donations and private support. They are not limited to the USA, they will take children from all over the world. The number for their information line is 1-800-237-5055. You might be on hold for several minutes, but don't hang up, they will answer."
We are very concerned for the predicament you are in and the difficult decisions you have to make. We do sincerely care about the treatment that Fatima needs and we assure you that we will be giving all that we can afford at this time.
We hope and pray that Fatima's feet will indeed get appropriate treatment.
Tom