Thank you for getting back to me so fast. After sending you that email, I continued to check out this web site. I found it interesting and helpful. Although I did see some pictures of some children with club feet and again got concerned. There was one picture of a child a couple years after surgery and his legs did not look normal. I was wondering if some children have more problems because of their feet. My son had an ultrasound of his hips and they are fine, that is a good sign right? Also, I read about how most kids need to go through years of casting and splints, I don’t know if we are prepared for that. We were told that casting would be done for the first 3 months or so and then possibly surgery...that’s it. But I am finding that that probably is not true. Also, did you and your wife go through a time of saying "why our baby?". We feel that way, but also realize that Michael could have been born with a much bigger problem....we are thankful that he is a healthy, happy baby boy. I just don’t know how to deal with what’s ahead.
Kari

Date:    29 October 98
From:    Trang, Thuytrang <thuytrang.trang@concert.com>

I got your name from the Internet. We had an ultrasound at 17^th week, and found out that our baby has bilateral clubfeet. In your article, you mentioned having had an ultrasound at 14^th and 20^th week and that at 14^th week the clubfeet was barely noticeable. How was it at 20^th week? Was the doctor able to tell at the 20^th week that it was going to be severe?
We will have another ultrasound at 21 week.
When the doctor do casting, how long does the pain last before the baby is comfortable again? Had Phoebe had more than one surgery per feet?
How is she doing? How is your family doing?
Thank you for your time.
Cordially,
Thuy

At Phoebe's second ultasound the sonographer spent considerable time looking very closely at her feet. He could confirm that it was bilateral clubfeet but he did not make an assessment on how severe her feet were turned. The doctor who applied the plaster the day after her birth did comment that the clubfeet were moderately severe.
I don't believe there is any pain when the plaster is applied. There is some discomfort for about 24 hours due mainly to the plaster being so cold and damp. We eventually started to bring blankets and hot water bottles to the hospital so we could wrap up her legs as warmly as possible. That seemed to help.
Phoebe had just the one surgery per feet. She did have a general anaesthetic three times, one for each foot and again for the first plaster change a few weeks after the surgery on the second foot.
Right now Phoebe's feet are looking quite good. Most people would not even notice that they are not perfect. We will be seeing her orthopaedic doctor in about 3 weeks and we are keen to know how much more we can expect her feet to improve. We would certainly hope that no more surgery will be required but nevertheless we would prefer that if it means getting her feet really straight!
It is better that you know your baby has clubfeet from the ultrasound. You will be better prepared and know much about what to expect. At the birth of Phoebe we were able to focus on everything that was wonderful. I hope you have the same experience at the birth of your baby. I wish you all the best.
Tom Clark

Date:    27 October 1998
From:    James J Higham  <james.higham@health.sa.gov.au>

I hope you can help me. My nephew, Henry, was born in February this year at the Women's & Children's Hospital in South Australia with talipes. He was placed in casts after birth which were changed on a regular basis. He underwent surgery at 3 months with casts applied for approx 4 weeks after. He then went into splints and is currently in them for 8 hours a day. My sister has just been notified that Henry must go back into casts for the next few months because the plaster used to form his splints is not available in larger sheets, hence they can't make splints large enough for his feet. Henry is big for his age but not that big. I was wondering if you could answer some questions for me.
Is this is a standard step to take? What will happen when they remove the plasters in the future? Will he not need some form of support after these casts are removed?
I have read through the emails posted on your web page and no-one mentions their children going back into plasters so long after the initial operation and after being in splints for so long. At the moment my sister is still in shock at the thought of Henry going back into plasters. He has only just settled down after his operation. He had his operation at the W&CH, receiving no pain management post-op (they have no pain management protocol!). He was admitted to the Memorial Hospital a day after he was released from the W&CH with severe diarrhoea. He was in for about a week and was later diagnosed with salmonella poisoning. The W&CH will not release the name of the strain from their kitchen but they did prepare some of Henry's bottles after his operation. He has also been cut in the past by the physio while having his plaster removed at the W&CH (the scar is still visible). I would ask someone here but I don't trust the W&CH and the Repat is mainly concerned with old-age care. I hope to hear from you soon.
Regards James James J Higham
Biomedical Engineering, Repatriation General Hospital, Daw Park, South Australia

James I am appalled at the mismanagement that Henry has received in hospital. I cannot understand why larger sheets of plaster are not available from somewhere.
I will put your email on our TIPS web site tonight and I hope that there are others who can offer some help or suggestions from what they have experienced.
I do know about Denis Browne boots. The ones that our Phoebe wears at night have leather soles and uppers and a steel bar holding the feet apart. They can be fitted without the need for plaster casting which the plastic moulded AFO's do require.
I hope you do get more suggestions for Henry.
Tom Clark

Thanks for your reply. I learnt last night that what they are actually looking to do with Henry is fit him with plaster casts then cut these down the side so that at night they can be reapplied by physically pulling the casts apart and fitting them to Henry's feet. This seems like an extraordinary step to take. I also believe this would be extremely traumatic for Henry. My sister will be seeing the surgeon in November and hopefully he can suggest other paths to take. I will let my sister know what you have told me and that you have posted my email on your web page. This will certainly lift her spirits.
James

Date:    26 October 1998
From:   Fiona and Paul Colcheedas <fionaetc@alphalink.com.au>

Thank you once again for your support, and for the TIPS information.
Alex had his plaster removed three days earlier than planned due to the pin sticking out nearly two centimeters and causing a lot of discomfort. Unfortunately, our usual paedatric surgeon was away, so landed a 'stand-in' surgeon for the occasion, who was adamant that Alex should have another cast put on for a further two weeks! But as I am a mother not to be reckoned with after 6 weeks of sleep deprivation and mental torture, he then checked with the receptionist who agreed with me - this was Alex's second and final cast. Phew! (Lucky for the surgeon, I reckon!)
So the plaster is off and we're on a home run now I hope. One thing that may be of interest to other parents is how much Alex's foot has healed with the help of laser-acupuncture, administed by our local GP. Two days after the plaster was off, Alex was still distressed and in some pain, as well as the foot being rather red and swollen. About three hours after the acupuncture, the swelling had gone down and he even put his foot flat to the ground! It's a painless procedure - simply a silver 'rod' with a red laser light coming out of the end and is not invasive at all. The GP recommended treatment twice a week for two weeks.
Tommorow, Alex goes back to the Children's Hospital to have his splint fitted, which he is to wear for six months "when he is up and about". Let's hope this is an easy transition for him, both physically and mentally.
But all drama and angst aside, his new foot is perfect! The photo we took prior to surgery and after the cast came off really illustrates the remarkable difference in both structure and length.
I hope our story is as beneficial to others, as the stories we read and the support we received, were to us.
Thank you all so much.
- Fiona and Paul Colcheedas
PS. I have some photos that I will scan of pre-op, post op, as well as the plaster being sawed off.

Thanks Fiona and Paul for keeping us updated on Alex so regularly. The page on our web site dedicated to "Alex's Story" will prove to be highly interesting and very valuable even for yourselves to look back to in a few years time. The photos before and after the surgery will also be a big help especially for parents who want to see what to expect.
I have never heard of laser-acupuncture. It sounds just ideal for our little ones who just don't need any more pain to cope with.
I must say that I was thinking of you and your sleep deprivation yesterday when I was writing to Leo and Leanne. You must hate to hear that some babies, talipes ones especially, actually do sleep through the night! I do hope Alex will be more settled now that his new foot is perfect!
Tom

Date:    24 October 1998
From:   Leo and Leanne Delgado <LALI@msn.com.au>

Hi, my wife and I read your response to our e-mail and wondered how your little Phoebe was progressing?
Also, we have noticed that Mikaila has been really unsettled since she had her plasters re-applied. We found that during the 5 week period prior to her surgery, when she was free of plasters, that she was generally very happy and content. Further she consistently had a full night sleep - uninterrupted !.
Now we find that she wants our constant attention and expresses her frustration's in a fairly 'dramatic' manner. We also have not had a full night's sleep since the operation (about 5 weeks ago). Did you encounter the same behaviour with Phoebe ?
Some parents would argue that we should not complain, given that we have a baby that normally sleeps the night through, but we cannot find any other explanation for her interrupted sleep habits.
My wife and I will be sending you some photos in the next couple of days, we have photos of Mikaila before the original cast (day 2), photos after the cast and before the surgery (5 months) and also photos at the hospital after the procedure.
Leo & Leanne

I did think of telling you something about Phoebe except that we won't know anything new until we go back to our orthopaedic doctor in early December. Her feet look fairly straight most of the time but she runs a bit awkwardly and still trips up alot. When I watch closely how she walks and runs I can see her left foot turning in quite a bit. She still wears splints (Denis Browne) at night and we believe they have made a big difference particularly during the first 6 months of this year. There has been a suggestion from another orthopaedic (about 4 months ago) that the feet will correct themselves as she grows and as she gets more and more mobile. He also suggested she need not wear the splints anymore. We have been reluctant to take the splints off until we see her normal orthopaedic in December. It would be so difficult to put her back into corrective footwear if she had a period without something on her feet at night.
We can relate to what you are going through with Mikaila. Phoebe has always been a good sleeper. She slept through the night from the time she was about 4 weeks old! However after each plaster change and after the surgeries we had many sleepless nights. We despaired at times that she would ever get back to her normal sleeping through the night. We were assured that children do slip back into their normal sleep routine and apart from the occasional night when something has unsettled her she is indeed back to normal. We are so lucky!
It may take some time but I would reckon that Mikaila will eventually go back to the sleep habits she had before the surgery.
I look forward to seeing Mikaila's photos.
Tom

Date:    24 October 1998
From:    Teia & Wally Matthews <vic1@net-2000.net>

My son Bryan was born on Feb 09 1998. He was born with Bi-lateral Club feet.Me and my husband had never seen anything like this or eaven heard of this before.It came as complet suprise.I think I cried for days aftre that.He was born at 6:05 that night and by 11:00 the next day he had hip cast on we did not even know the Dr. was going to put cast on him.He went througt 4 months of sereal casting.Every week a new set of cast.I think about it now and I know it was hard on me adn his dad but it is hard to understand what he was going through.Well after about the last month the Dr. said that the casting was not helping him anymore.So they decided to let him have a break and stopped it for about 3 months untill he was 7 months old.On Sep 11 1998 he went in for sergery everything went very well.On Oct 15 1998 they took the cast off and pulled the pins and put him in his AFO's.He is doing great and even trying to walk.I just wish we would of had more info then we did going in to this.I know this is not going to be the last of this for him his Dr. said the bone in his feamer had turned when he was still in my belly and he hopes that his standing will help strenthing that but he dose not seam to concerned about that right now.We are just takeing this one step at a time because everything that happens it dose for the first time for us and thats just how we take it.
Teia & Wally Matthews

Thanks Teia & Wally for telling us about Bryan. I think it must have been very hard for you both when you did not know anything about Club Feet until the day Bryan was born.
I know just how much it helped us to talk to other parents who had experienced children with club feet. Also reading the many stories of others gives you a better appreciation of the sorts of things you can expect. I still have apprehensions about what is still in stall for our Phoebe but after reading so many different accounts I don't think I will ever experience the shock that you have experienced. I hope Bryan's feet improve quickly and his progress is less traumatic for you. Tom Clark

Date:    22 October 1998
From:   Leo and Leanne Delgado <LALI@msn.com.au>

I am writing to you to keep you updated on Mikaila’s progress. I think in my last correspondence I advised that Mikaila would require surgery. Mikaila had surgery for both feet on the 24^th of September 1998. She was under for approximately 2and ½ hours. Giving her up for the surgery and seeing her immediately after the surgery is by far, the most difficult event my wife and I have had to endure. I now appreciate the emotional roller coaster that parents ride during these times.
My wife and I stayed by Mikaila’s bedside for the three days that she was in hospital. She was most of this time "knocked out" with morphine and other painkillers. They also had to administer Valium to control the spasm she was having immediately after the operation. Pain killers or not, these kids still go through some excruciating pain – I could see this in her face. It made me feel totally helpless. This passage may sound a little negative, but I think if you are to use this in your newsletters, parents should be prepared for the reality of this procedure.
Our surgeon advised that the operation was a success and he is confident that he has attained a good result. We live in hope that she will not require any further surgery down the track.
Mikaila had extensive surgery on her left foot compared to the right. She has two pins inserted in her left and one in her right. Within three days the swelling had subsided and we were allowed to take her home on Panadol only. She had a half cast/slab only for the first week to allow for all the swelling to diminish before having to take her back for day surgery for a full plaster cast. She now wears fluoro orange plaster casts on both feet (not a good colour for a little girl) for the next 5 weeks. We will return at this time where these plasters will be removed as well as the pins. They will then re-apply further plasters for another 6 weeks. This all means that by Christmas Mikaila should be out of plasters and using AFO’s at night only.
In the last couple of days Mikaila’s left foot seems to have picked up an infection around one of the pins and she is now on antibiotics. This may mean that the pins come out earlier than we expected.
Mikaila seemed to bounce back to her normal self after 3 days from the operation,although we have noticed that she is uncomfortable with the plasters. She is now 5 months old and wanting to sit up or play on her tummy etc. – things which are almost impossible with these "big above the knee" plasters. She also had a period of 5 weeks without plasters before the surgery and during this time she was enjoying full body baths – now we are back to the old sponge bathing. She has also acquired the habit of kicking one plaster with the other, we are not sure if she is playing or if whether she is itchy or uncomfortable in them.
From a little girls point of view, I am sure that Mikaila has gone through and is still going through some discomfort, but I know that she will not remember as she gets older.
From a parents point of view I can tell you that the procedure although heart wrenching, is not as bad as I thought it would be. I think that the support a couple can give to each other during these trying times makes the world of difference. When I felt down my wife would pep me up and when she was feeling down I would do the same. I suppose this is what got us through this challenge.
We have taken some pictures of Mikaila in hospital and will send you copy if you would like for your newsletter.
Leo

Thanks Leo for keeping us updated on Mikaila's progress. It would be excellent if you could send us some pictures. You can send them   to me at TIPS PO 28 Box Hill 3128 (with my name on the envelop as several of the TIPS members check the mailbox). The photos will be scanned and then I will return them to you.
It is not pleasant to write or read about the pain that our little ones go through with surgery. I have sometimes wanted to leave out the more unpleasant parts of parent's stories however I am now more inclined to agree with your comments that 'parents should be prepared for the reality of the procedure'.
I can assure you it will be a bonus to have the plasters off before the hot months. It will possible to be able to take off the AFO's and put Mikaila into baths and swimming pools.
Thanks again for the update.
Tom

Date:    15 October 1998
From:    Stacey Riffitt  <triffitt@zoomnet.net>

Adam is 5 years old now. He was born with bilateral clubfoot with his feet being fused to his calves. But, with much prayer in two hours his feet had loosened up tp a 90 degree angle. I am Adam's mother. His dad and myself have really had to grow through this ordeal. I found out through this many members of my family have had children with clubfeet. I am a registered nurse and I have found that it is very common to have members of the same family to have clubfeet, due to the congenital anomaly.
Our story is one of hope and growth. We were in shock when we learned of Adam's defect. But, my husband Todd, was so supportive. He just looked at me and said,"Stacey, at least he's breathing and God will strengthen us." And, this is how we gained our trust and made it through.
Adam was one week old when he received his first pair of plaster casts (what a horrible experience). Here we were first time parents and we had to watch our new precious baby cry in pain. I know the definition and doctor's word on procedures of casting say it doesn't "hurt" just makes them mad. Well, I'm saying from the first hand mother, IT DOES HURT!!!!!
Adam was in casts for 3 months then our pediatrician decided he needed further help. He was referred to Dr.Allen Beebe, Columbus,Ohio. USA for treatment. We fell in love with our Doctor and we feel he is the best in the field. He decided surgery was our best option. So, at 6 months of age Adam had his first surgery. Then 3 weeks later he had his second (which was horrible). He went through so much pain with the second foot (right foot). But, he was a very strong and happy little boy. He withstood so much. I really gained so much respect for my little angel. He helped myself and Todd to grow.
After surgery fiberglass casts were put on and left on until he was 9 months old. Then the great day of revealing his new feet came. They were the most beautiful feet I had ever seen. And, on December 10,1994 Adam took his first steps...3 to be exact. I just shouted with joy and cried.
God has been so good to us. He performed a miracle in Adam's life. We know what God can do. Clubfeet seems like the end of the world because your baby is not perfect (or what you think is perfect). Parents of children with a birth defect need to support each other. Our children are perfect, because they are ours and they have a mission in life "To allow their parents to grow stronger to each other and to God".
I know what people who are new to the casting and surgery are going through. But, remember one thing, you will get through it. Just love your child with all your heart and don't ever for one minute think they are not perfect or they are not the most wonderful thing God could ever give you.
Adam is our miracle born on 12-13-93 and our miracle once again on 12-10-94.
Thank You,
Stacey,USA
"God's grace is sufficient for you"  (II Corinthians 12:9 )

Hi Stacey, your faith has certainly been a wonderful support to you and Todd. Your email has helped me and no doubt it will help many others who read this. I especially appreciate the thoughts that our children are perfect to us, that they are the most wonderful thing God could ever give us.
I am sure that Adam will be very much loved and this will give him the strength to bear any difficulties he has with his feet or anything else.
May God continue to give you his love and keep you strong in your resolve to love Adam.
Tom Clark

Date:    14 October 1998
From:    Diane Auty <autyfamily@easynet.co.uk>

Just thought I would write to thank you for your page which I have read with interest. I live in England and have a son with bi- lateral talipes he is 11 now and still under going surgery at Great Ormond Street hospital in London . I would be grateful if you have any information regarding older children you could E mail to me thanks in anticipation
Di Auty

Your email has been put on the TIPS website and I am going to hope that there are other parents out there on the Net who have an older child with talipes and who are willing to contact you with the help you need.
I hope all keeps improving with your son's feet.
Tom Clark

Date:    11 October 1998
From:    David and Lisa  <thechief@televar.com>

I am in my 21st week of pregnancy. My son, Cade, is due February 21, 1999. I had an ultrasound yesterday where they discovered that both of his feet are clubbed. I am not really sure what this means or what information there is for me but I came across your webpage and I was hoping that I could subscribe to your newsletter.
My husband and I are both shocked and confused and have little if no information about this defect. I would appreciate it if we could be put on your newsletter.
Thank you, Lisa

Congratulations Lisa and David on the expected arrival of a boy! I love to hear of people who know the sex of their unborn baby and calling him by name!
I do understand the shock and confusion you feel when you first discover club feet. However it is good to know well in advance and to become well informed about club feet. Basically it is a correctable condition! What helped my wife and I was reading all the stories about children born with club feet and talking to many of the parents. Doctors can give you the medical procedures but you will want to know about the day to day experiences living with a child with club feet.
About the newsletters. I am putting nearly all the information from the newsletters onto this web site. The only bits that are not there are the information about social gatherings for a handful of families living here in Melbourne. At this stage we are only mailing to families in Australia. So my best recommendation is to read all the stories and emails at TIPS and come back here every month or two for updates.
There are now more sites like TIPS as well. When our Phoebe was born just over 3 years ago there was very little on the Web, so we started TIPS. However there is much more now. So keep reading and researching.
Best of all, when Cade is born you won't be too concerned about his feet at all and you can just bask in the joy of new birth.
I hope all goes well with your pregnancy. Tom Clark

Date:    10 October 1998
From:    Fiona and Paul Colcheedas <fionaetc@alphalink.com.au>

Re: Alex Colcheedas (nearly 4 yr old twin) - an update from his mum and dad, Paul and Fiona
Well, it's been four weeks since Alex had his so called 'minor operation' on his right foot to correct the Talipese. What was supposedly minor, was in fact, a nightmare for all of us, both physically and emotionally. Alex and the rest of us have been in consultation with a psychologist and more recently, a psychotherapist, which has helped us, and him, in managing his emotional response to the opeartion.
...So we've made it to the four week mark, and are counting down the days until Alex gets his cast removed.
Thank you to everyone who has sent me emails from all over the world to offer help and support - even words of comfort and reassurance. I told someone yesterday that in all our searching for answers and help since the operation, the most effective has come from the internet - in particular TIPS. So thank you!
When Alex had his cast changed (under a general anaesthetic) two weeks ago, his life has been a little more comfortable, though we are still working with his waking and crying and tantrums. But all that has subsided somewhat. It's great to see him now shuffling along on his bum, riding his bike with one leg out at right-angles, and plopped in the sandpit making truck noises. Never thought we'd see that until the cast came off!
We have been advised to encourage lots of play in expressing himself emotionally and creatively. We purchased a hospital play kit and have bought some gooey paints for painting. We have also marked on a sheet the number of days to go until the cast comes off, on which each day we draw a 'leg of his choice' - sometimes it's a plastered leg, a crooked leg or even a 'leg like this one' - i.e. his other normal leg and foot.
I suppose my next concern is what happens when the cast comes off. I've been reassured that it is not very painful when the pin is removed, which is a relief. Is it traumatic for them to have the plaster sawed off? And what do we expect to see what's underneath? The surgeon tells us that he will have to wear a splint for about 6 months afterwards. What does this look like? Is it uncomfortable? And will he be able to walk on his foot straight away or not? I feel that I want to have all the information possible, so that we be prepared...
If anyone can give me some clues as to the 'what next' stage, it would be greatly appreciated. It seems our medical profession forget about the after-affects of their marvelous work. They also tend to assume we know exactly what it is they are talking about. We were even unaware that he needed a splint until I made an appointment for the plaster to be removed.
Thirteen days to go. Feels like years have passed. But in the scheme of things, it's a drop in the ocen. But this drop feels more like a dollop - and we're in the middle of it!
Fiona and Paul

Thanks Fiona and Paul for keeping us (TIPS) updated on Alex.
I think its great that you have some help from a psychologist and a psychotherapist. You are obviously developing some good strategies for helping Alex and yourselves cope.
I am very heartened that you have found help via our TIPS site. It has given me much encouragement just to know that the site can really help others.
About the 'what's next'. The electric saw did not bother Phoebe but she did cry when the pins were pulled out. I don't think it was traumatic because she settled quickly once we gave her a cuddle. However I must add that Phoebe is normally fairly placid and at a very different age to Alex so I would not presume that this is the reaction to expect. I will attach a photo of 'Johnathan' just after a plaster removal following surgery. Johnathan's Story will appear on TIPS in a few days time with more photos. I also have a photo of the various splints Phoebe has worn. I will have that scanned soon and available on the TIPS home page. Phoebe could certainly walk with splints on but just how soon after surgery I could not guess. (Phoebe was not walking at the time of surgery). I hope that you get some more feedback from others on the Net when they see your email.
Hang in there, it will be worth every effort you can make.
Tom

Date:    10 October 1998
From:    Sara Spalding  <Spaldingsd@aol.com>

Johnathan, and his twin brother, Steven, were born on 8/3/94. We had no idea he would be born with severe bilateral club feet. He was casted by that night. He went through weekly cast changes for the first few months. He had his achilles tendons released at 4 1/2 months of age. After a few more months of casting, we stopped with those and he wore AFOs. They weren't much help in our case, and at 9 months of age Johnathan and his twin had surgery to put tubes in their ears and Johnathan had his corrective surgery at the same time. His incisions were a horseshoe shape and he had 3 pins in each foot. He had full plaster casts for 5 weeks after surgery. Casts were removed and the pins, and we went back to soft casts (fiberglass) for 5 more weeks from below the knee. One more cast change with short, soft casts and then were done. During the last casting, he got the chicken pox...and since he was the 3rd one of my children to get them, he got the most pox. We had him soaking in the bathroom sink with Ziploc bags over his casts...what a sight! Johnathan's last set of casts came off when he was 13 months old...within a few weeks he was walking. He has never had any physical therapy or had to wear special shoes or braces after surgery. After a 2 year lull of dr visits, we just saw our pediatric ortho. and got a wonderful report. We heard the words that every parent longs to hear..."No limitations, no restrictions. We'll see you in 3 years."

Please let me know if you have any questions. Good luck with your upcoming doctor visit. Sincerely, Sara Spalding

Date:    8 October 1998
From:   Tracy Hutchinson <thutchinson@dehaasa.gov.au>

Hi I wrote to your newsletter once before and I appreciate the work you do and time and effort. I would like to know where I can get shoes from as I have troubles finding shoes that go with dresses as I cannot wear doc martins for the rest of my life.? please help me. also as I have gotten older in age I am 22 I am getting problems with the cold weather and can hardly walk somedays it is in the hip to feet as I have one leg longer than the other I was wondering if anyone else suffers or has any problems continuing through out life? You do a wonderful job on the Newsletter keep it up...

Tracy, I have been able to find out that 'Speeds Shoes' is definitely one shoe chain that will split shoes. They do not advertise this but they are committed to helping people who need a different size shoe on each foot.
I have seen a podriatrist because I also have one leg longer than the other and I am now wearing orthotic inserts in my shoes. He has recommended the 'Athlete's Foot' to get shoes that fit well, are comfortable and support the orthotics. Several other TIPS committee members also speak highly of the Athlete's Foot. I hope these stores are in South Australia. If not we suggest that you contact a podriatrist or orthopaedic doctor in SA who should be able to recommend suitable stores to try.
I can confirm that I have had problems with my back which I believe stem from the talipes condition at birth. I can't complain when I have had a very active life including much sport. But I must say the orthotics has made a big difference in the last couple of years. So maybe a podriatist is worth considering for yourself. I do hope you can find better relief especially in the cold weather.  Tom Clark

Date:    1 October 1998
From:    Sharon Delpol <delpol@valylink.net.au>

Chris has been back to see his specialist since May, and we have been told he will have to have tibia rotations as his knees and lower legs are crooked (for want of a better explanation - I'm only Mum!). Chris is fairly well o.k. with this, but sometimes he asks me if it's going to hurt. How do you tell a little boy that yes, it will hurt, but it's for his own good? I feel so cruel putting him through it. His (paternal) grandfather says I should ignore what the specialists say, that there is nothing wrong with him, and has been telling Chris that he doesn't have to have the surgery. I could brain him! Christopher is 5 next month and does understand now what is going on. Is there anybody out there who could tell me what life is like going through tibia rotations, as a parent/carer? I'd like to be prepared ... On another subject, Chris is still undergoing tests (gastroenterologists, neurologists, etc) to determine the cause of his bowel function problems. They are now wondering if it could also be tied in with his talipes. We are down at the RCH every three weeks at the moment for his bottom, but we don't have to see his specialist for his legs until February - it's a bit of a break for his legs! (Pardon the pun).
Regards,
Sharon.          (see also Chris' Story)

Hi Sharon.  Thanks for the update on Chris. I don't know anything about tibia rotations myself, however I am sure there are others who have had some experience of these rotations and I would ask and hope that they email you. I can put you in contact with Nadia North (see Taylor's Story) who says "If anyone is going to have to go through the bone rotation and wants to talk it through I'd love to chat".
http://home.vicnet.net.au/~tips/taylor.htm
I hope it all gets better for Chris soon. Please keep us informed.
Tom

Date:    28 Sept 1998
From:    Babita Chatterjee <babita_c@hotmail.com>

Hi! I'm Babita from New Delhi, India. Our 9 month old son has been detected with the problem with talipes(CTEV) in his RIGHT FOOT right after birth.At his 4 weeks of age the Orthopedic surgeon strapped his right- foot with 'micropore' which he used to change every week to evaluate the progress of rectification.Then from 3 months of his age the Dr. started putting plaster-of-Paris cast from above the knee to the tip of the toe. from 6 months onward till date he has been put on plaster from below knee. Our son has just started crawling. Only last month the Dr. told us that though majority of the defect has been rectified but still he wants to go for a"minor"(!) surgery to strech one of the tendon. His this word really upset both me and my husband because so far the Dr. for all this month was saying it can be rectified fully only by casting plaster and no surgery is required. Now to get more insight into this subject I just scanned the web and found this site which appeared to me very useful. Now may I seek some help from somebody who has gone through the same problem with their baby to suggest me whether the surgery is absolutely needed or there is some alternative treatment ? What is the success rate of this surgery? Is this age (9/10 months) is ideal for surgery? i'll be obliged to receive any quick reply at< babita_c@hotmail.com>.
Thanks. BABITA

I know how frightening it is to think of surgery on your baby. However it is a successful way to deal with severe cases of talipes. When I was born with talipes 49 years ago there were many operations where the doctors stretched and pulled on the foot so much that ligaments were badly torn and there is permanent damage to the calve muscles. Our little Phoebe who was born 3 years ago with talipes in both feet had surgery at about 8 months. There was only one operation on each foot and the correction to her feet is remarkable. This is a more effective and gentle procedure.
As a parent it is difficult to see your child suffer but I can assure you that our Phoebe was back to her normal self very quickly, in a day or so. Her feet are now quite straight and she walks well. However we still use splints on her feet at night because it is very common for the feet to turn back again. We really hope she does not have to have more surgery. I imagine it will be far more difficult to deal with a 3 or 4 year old child before and after an operation.
From our experience with Phoebe I know that you do need to give lots of pain relief and comfort especially in the 24 hours or so after the operation. Make sure you talk to your doctor and the hospital staff about pain relief.
Your doctor is in the best position to know what is best for your son's feet. If surgery is needed then I can at least reassure you that it is better to have it done now rather than years later. At 9/10 months old your boy will not remember the operation and he will get over it very quickly. I hope all goes well with whatever treatment you have for your son's feet.
Tom Clark

Date:    26 Sept 1998
From:    Deborah  <DEBSIMP@aol.com>

Here is the story of my daughter Georgina (Georgi), she was born on 27 March 1997 - we live in the UK.
Georgi was born with severe club feet. They were strapped from 3 weeks old to about 4 months when she got to strong for the straps which started to cut into the skin above her knees and make them bleed. She had surgery at 7 months old, each foot was operated on separately - at this time she had soft tissue releases. She had big problems with the casts, they were changed under general about 6 times in about 2 months.
When her casts were removed her feet were perfect. Within a few days her feet had started to move back to clubfeet position - so she was put back in plaster for a further month, but we had already lost the correction on one of her feet.
We had problems during the Casting for the AFO's, the technician and two nurses held Georgi on the table while the casts were made, the technician managed to move her foot into a perfect position although our doctor said she would need surgery to achieve this. She was in so much pain - needless to say in hindsight I feel so guilty ....... why did I let them hurt my baby so much. Since this has happened I have spoken to numerous doctors and they have all said that AFO's are for holding not correcting, so therefore this procedure was totally unnecessary. The worst thing about this was that the AFO's didn't fit as it was not possible to get her feet into the position of the AFO's so they were never worn on the instructions of our Doctor.
She now has a morbid fear of the plaster theatre where the casting was orginally carried out, and as soon as she see's the Sister, Georgi starts going into hysterics. She is also now so scared of strangers and anyone in uniforms as she associates them with causing her pain.
By the time she was 11 months her feet had completely lost their position and were turning again. As she was not standing there was nothing we could do but watch them.
At 14 months she had her second surgery on both feet, again each foot was operated on separately, this time pins would be inserted to try to maintain the position. Again she had plaster problems, we eventually found out that she objected to having her toes squashed together as she has big gaps between them. This time the AFO's were cast under general, so she did not have to go through that upset again.
Pain Relief: For the first three operation Georgi had caudal blocks, then morphine and Voltrol, even with all this she was in a lot of pain - (My heart was breaking). For the last operation I asked if she could have an epidural left in after the surgery - what a difference, she was still unwell and very uncomfortable but not in pain. She even sat up in her cot and played with her toys. The epidural was left in for 24 hours after surgery. At 14 month she had two surgerys two weeks apart I found that after the 1st surgery she was moving around alot, trying to pull herself up on the cot, turning over etc. When she had the epidural, she was unable to use her legs, so she stayed in one position, was alot calmer. What surprised me was that she never once touched her IV tubes - it was almost as if she knew they were helping her.
Georgi was very unsettled after this surgery, she had night terrors which would involve her waking up screaming, there was nothing you could do to calm her down, except cuddle her, take her downstairs turn all the lights on and stay up with her for about 1-2 hours. This went on for about 3 months - I'm glad to say she seems to have got over this now.
When the plasters were removed, she had sores on her feet and part of her scar was bleeding, I was surprised to see how beaten up her feet looked. She has a scar above her big toe where the pin was removed, and another on her heel.
Her AFO's fitted, and she has to wear them most of the day and night until she is walking, but at 18 months old, she is still a long way from that. She can now stand when holding onto something - but not for more than 30 seconds then she just collapses onto the floor.
She also has Physio - but she finds this very painful and screams the house down, it is very hard to convince yourself that you are doing this for her good. I also massage oils into her scars and legs to help the healing.
Georgi is very double jointed (Hyper Mobile), because her feet are now forward facing and flat, she has decided that she will twist her whole leg from her hips round so that her feet are back to a clubfoot position. Due to this, I leave her AFO's on most of the time.
24 September 98 - Her feet are still able to get into a correct position, although to look at them they have definately turned in again. Still not walking - I think her brain is working on talking.
What a great site!!!
Regards
Deborah

Thank you for writing down Georgi's story. You have certainly had a difficult time and I know how it breaks your heart to see your baby in so much pain. I have read your email several times and each time I have seen images of Phoebe just after her operations and the memory still worries me. I do feel sure that Phoebe and your Georgi will not be bothered by memories of pain for very long. No doubt Georgi will be walking soon and that also seems to help in getting the feet flat and a bit straighter. I will put your email on the TIPS website as I am quite sure it will touch the hearts of many parents. I hope all goes better with Georgi's treatment and I hope you can keep us informed of her progress.
Tom Clark

Date:    26 Sept 1998
From:    Paula Ryan  <peajay61@hotmail.com>

Hi! I just love your website! I have a son who was born November 11, 1996 with clubfeet. After serial casting and surgery on one foot, he is doing just great now. I also post to the ParentsPlace bulletin board you have been hearing so much about and also recommend it highly. You have a wonderful site and I am very jealous that you have an organization to provide support and information to parents in the same situation we were/are in. Clubfoot is not a rare condition, but when your baby is born with it, it can be devastating. There are so many people out there still without internet access who could benefit from the support and information we provide each other online. I wish I had the time and resources to organize something like this nationally, but alas I do not. One thing I have done is a web site similar to yours (however not as nicely done). It is at http://members.aol.com/clubft/index.html
I have a link to your site on it, and you are welcome to reciprocate.
Keep up the good work!!
Paula

Thanks for your response to the TIPS website and your site is fantastic. I was so pleased to see the same thing happening. It is really good for parents to tell of their experiences with club feet and you have collected so many! I still have a long way to go to read through all of them. I have just now put a link to your site on the TIPS links page. I know that parents just discovering a clubfoot condition in their child really do want to read as much as they can about it. So it valuable to have links to each other's sites and give these parents a wealth of information and a vast range range of experiences to explore! Thanks for getting in touch. I will get onto ParentsPlace soon, I hope.
Tom Clark

Date:    17 Sept 1998
From:    Fiona and Paul  <fionaetc@alphalink.com.au>

I have twin boys, Sam and Alex, who will be four years old in December 1998.  Alex was born with talipese in his left foot.  At 3 weeks of age, he underwent corrective treatment with plaster casts, up until he was 5 months old.   He then wore a splint until he was walking at 14 months of age.  The orthopaedic surgeon seemed quite pleased with the progress of his foot, and did not need to see Al again until he was 3 years old.
So just a few months ago we returned as requested, thinking he would get a clean bill of health for his little, high-arched foot.  But the surgeon seemed to think he would benefit from surgery.  "Minor - a cast up to the knee, just an overnight stay..."  We were relieved to think it was going to be no great ordeal.   Poor Alex had had enough of a bad run since he was born - we didn't want him to endure any more trauma.
Just last week, Alex went in for his surgery.  He came out with a pin (which we think looks more like a tent peg) and a plastered slab (to allow for swelling) from toe to thigh.  He was on morphine for nearly three days, he was in so much pain and distress.  On the third day, they began to wean him off the morphine and administered panadol, coedine and valium (for his painful muscle spasms).
Well, coming home has been a nightmare.  His pain has been managed with panadol only, which is a great relief.  But what we weren't prepared for (as with most of this whole procedure) was "Post Operative Stress", or "Regressive Behaviour", as the many phone consulations with specialists and help-lines have diagnosed him as having.  And the valium?  Well, it seems he has an iron cast will, that even valium can't calm him down - let alone the muscle spasms that wake him at night (WHEN he sleeps, that is!).
Has anyone else had behaviour problems with their child/ren post-operatively?  I know Alex is only trying to make sense of what is happening to him, but it's wearing us down to the point of being quite a crisis.  And then there's the other twin to consider in all of this, who has been an absolute angel.
So it's wheelchairs, tent pegs, tantrums and angst for the next 6 weeks or so.
Alex is also afraid to go into hospital again, which he is next Thursday to
have his cast changed.  I hope it's not too painful.
And can somebody tell me how pulling a tentpeg out of a little person's foot doesn't hurt very much?  I'd at least want a local anaesthetic.
What about bathing and showering?  Is the 2nd cast waterproof to allow boys to do what boys want to do: play in the sand and dirt with their trucks and tractors, then have a bath or shower to wash it all off?
Any help or advise, or enlightenment would be greatly appreciated.
Please email me on : fionaetc@alphalink.com.au
Fiona & Paul
Trembath/Colcheedas/Quigley

Dear Fiona
I hope we can get some help or advise for you from parents who have had some similar experience as you are having with Alex.
I will have your email on our TIPS website by tomorrow and we are also putting it into our next Newsletter which will be ready for distribution within a week from now.
I too could not understand how those pins could be pulled out of the feet without some anaesthetic. Phoebe had 2 pins pulled from each foot when she was only 10 months old. She cried but she was quickly consoled. However I think she was too young to have any anxiety about hospitals.
I hope all goes well on Thursday and I certainly hope you do get to hear from other parents especially with the behaviour problems.
My wife and I do feel for you.
Tom Clark

Date:    12 Sept 1998
From:    Sara Spalding  <Spaldingsd@aol.com>

Hi!  My name is Sara Spalding.  My son, Johnathan, and his twin, Steven, were born 8/4/94.  Johnathan was born with severe bilateral club feet.  He went through serial casting and a cord release procedure at 4 1/2 months.   At 9 months he had the corrective surgery, 12 weeks of casting, and viola!!   He has been doing great and has had no p/t or AFO's after surgery.  We go in 2 weeks for a visit to our ortho...it's been 2 years.  We look forward to a wonderful report. 
At the time we went through this, there was nowhere to find info or support. Our dr was wonderful, and I wanted to help others going through this.  I put together a small handbook for him to share with his patients.  Through the years I've sent updates to him along with pictures. 
Keep up the good work.  We have a group on a bb at ParentsPlace on clubfoot and it has been wonderful to form a bond with so many others facing this journey.
Best Wishes,
Sara Spalding

Thanks Sara for your feedback.
I was very impressed to hear of someone putting together a handbook for their doctor and keeping it updated. Actually I am keen to get more pictures on the TIPS site especially showing turned feet or plastered feet or feet in splints of any kind. If you are able to attach them to email I would be delighted.
I am hearing quite a bit about ParentsPlace and I am keen to get involved. I just need more time to get on top of the TIPS correspondence and the updating of the site as well as giving every spare moment I can to my own family.
I hope all goes well with Jonathan's treatment.
Tom Clark

Date:    10 Sept 1998
From:    Jennie  <jennief@integritynet.com.au>

Dear TIPS,
I am the mother of an 8 y.o. boy named Todd who was born with bilateral talipes in 1990. I have only recently joined the net and was amazed to find your group on my first log on. I wish a support group like yours was available to me back in 1990 when Todd was born. I was desperate for information on his condition and while the doctors' and surgeons' could give me all the medical information I wanted, practical advice on what to expect from someone who had been in the same situation was what I needed most. It is for this reason that I am writing to you.
First let me tell you Todd's story.
We were unaware of Todd's club feet until the time he was born in August 1990.
He was my third child and I have since had another in 1992, (who, despite our concerns was not born with any foot deformity). His birth was uneventful apart from a very sluggish labour and an excess amount of amniotic fluid. He had a bit of trouble breathing at first but improved quickly. The doctor informed us of his club feet but seemed unconcerned as it was a "fixable problem". Plaster casts started the day after birth on both feet with his right foot being worse than his left. After discharge from the hospital, serial plasters above the knee continued, being changed on a weekly basis. We were referred to an Orthopaedic/Paediatric Surgeon at Camperdown Children's Hospital (now The New Children's Hospital, Westmead) whom we saw when Todd was about two weeks old. The surgeon seemed confident that his left foot could be corrected non surgically, but the right foot would almost certainly need soft tissue release surgery.
We continued with serial plasters until 6 weeks of age when we saw the surgeon again. At this visit Todd was booked in for surgery to both feet in November 1990 (He would then be 3 months old) as the serial plasters were not making a lot of difference. I went away from that visit howling and wondering how I was going to cope with it all as I still had a 2 and 5 year old at home who both needed my attention as well.
The surgery went well and 2 pins were inserted into each foot and back-slabs of plaster were put on with bandages. After a 6 day stay we went home only to return a week later for another general anaesthetic to check and clean the wounds and put groin to toe plaster casts on.
Another 6 weeks after that, the plasters were removed and the pins taken out. The removal of the pins looked pretty barbaric, however Todd was already screaming from the noise of the plaster saw so it was hard to tell how painful it was for him.
Yet another set of plaster casts were put on for 6 weeks and by the time they came off, Todd was nearly 6 months old and had grown quite a bit. Our major concern at this point was that the plaster was becoming too tight as small babies grow quite rapidly and by the time they finally came off, his leg in the calf area, whilst the circulation was not cut off, his leg was misshapen and this took some weeks to disappear.
At this point he had to wear special boots through the day which were held in a splayed position by a bar at night. It looked rather uncomfortable and took chunks out of the wooden cot, but they didn't seem to bother him too much. He has a very feisty personality which probably held him in good stead during all of this.
My memory fails me at this time and I cannot remember exact times and dates but I do remember that at some stage after this he went from the boots to orthotic splints which were made from a cast of his leg.(I actually still have them).
All went well from here, he started walking a little later than normal-- about 15 months and progressed on to start school in 1996.
He always looked a little awkward when he walked and more so when he ran, but one day at the beach in the soft sand, I noticed that the footprint of his right foot was almost sideways to the way his body was facing. He was 7 years old at this stage and the surgeon and hospital had moved to Westmead, so off we went to see him. He took X Rays and suggested that surgery might be necessary at about 12 years of age when his bones were fully grown. 12 months later however (In January this year) at his checkup, the surgeon advised that a cacaneo-cuboid bone fusion would have to be performed sooner rather than later as he was now starting to stumble over his right foot with his left foot and he was starting to get teased at school for his awkward running style.
We went in for this operation in the Westmead Children's Hospital in July this year. All went well and we came home after 2 days armed with wheelchair, crutches and sporting a flouro orange fibreglass plaster!!!!!. This stayed on for 6 weeks and now Todd is wearing another orthotic splint for another 6 weeks. I do not know if this will be the end of it, only time will tell as the purpose of the bone fusion is not for instant results but for the foot to pull around as it grows. He is currently walking with a limp but hopefully this is only temporary as it has only been 9 weeks since surgery.
Although this has all been difficult and very worrying at times, especially at the beginning when my small 3month old baby was taken away for surgery, we have managed and coped, as parents we had to for our child's sake. On the positive side, all the visits to the Hospital have opened our eyes and made us see how very lucky we are to have a child with a "fixable problem". Unfortunately not all children are quite so fortunate.
I would have loved to have been able to talk to someone who had already faced the sort of problems that we faced, not just the big problems but the little ones too.Not necessarily to give me answers but to understand and led a sympathetic ear. If you ever have someone in that predicament, please feel free to pass on my e-mail address. I can be reached at jennief@integritynet.com.au and I will be only too happy to help.
sincerely,
Jennie

Thank you Jennie for giving us Todd's story and for being so prepared to help other parents. For me eight years seems such a long time to be coping with Todd's foot problems. Of course I am thinking of our 3 year old Phoebe and wondering how much longer before her feet will be fixed up.
I will put your email on the TIPS site in the next day or so and I feel very confident that you will be able to offer much encouragement to any parents who contact you.
Many thanks and all the best with Todd's treatment.
Tom Clark

Date:    7 Sept 1998
From:    Melody Whybro <mwhybro@mail.usyd.edu.au>

I've just found this site via a bulletin board based in America! I'm from Sydney and my three year old son Max has just had his second lot of surgery for bilateral talipes equinovarus. He had serial plasters from birth, soft tissue release at 3 1/2 months and then straight last shoes (the first couple of pairs with wedges built into the soles) until his recent operation.
This operation was a split tibialis tendon transfer where the surgeon transferred half the tendon at the inside front of the ankle to the tendon at the outside front of the ankle. Max's first surgery was successful but as he got older his heels began to turn back under and his toes started to hook back a bit. He was walking fine and could kick a football (a Sherrin of course) better than most kids his age but we felt that we had to give his feet the best possible chance to grow as straight as possible.
The last couple of months have been interesting, with Max unable to walk. We've hired a wheelchair and made other accommodations but I think we worried before the surgery that he would become a cranky little boy due to the frustration. That didn't happen. He stayed his beautiful little self and doesn't ever complain that he can't walk.
This is a rather long way of introducing myself but I'd be very happy for parents with younger children to ask me questions as I know how I would have loved to be able to ask questions when Max was a baby. And if anyone else has had the split tendon transfer can I ask you some questions? My email is mwhybro@mail.usyd.edu.au
Melody
PS. a couple of photos of Max attached if you can use them: The first is five days old (after one set of casts).

Thanks for getting in contact with TIPS.  Max's operation, the split tibialis tendon transfer, is something that I am not aware of.
I am pleased that you have offered to help with questions and to give support to other parents.
It sounds like Max has a beautiful nature. Quite a number of parents have told me that their child with talipes has a placid temperament!
I have received a few emails from people who have found the TIPS site on an American bulletin board. Can you let me know how do you access this bb?
Thanks for the photos. I will certainly use at least one of them on the TIPS site.

Date:    7 Sept 1998
From:    Patti Jensen <knpjensen@worldnet.att.net>

Hello and thanks for your great site!!!
I monitor a Bulletin Board for parents of chidren with talipes, which is where I learned of your site.
My son Tyler was born with severe bilateral clubfeet on 6/24/96.  He was casted from 4 days of age, then had 3 surgeries, then wore a night brace on his left foot for one year.  He is now doing really great - walking, running, climbing.
I am now attempting to start a support group for parents of children with clubfoot...and would like to eventually create a website.  I have done lots of research over the internet, contacted state agencies which help people start support groups and/or help people with disabilities. They are all willing to help me as there is no such support group in existence here in the U.S.
This is why I am so excited to have found THIS site...and YOUR support group!  I would rather learn from you who have accomplished this rather than reinventing the wheel!!!
Could you give me some information on how you got your group started?  How long has your group been in existence?  Was it a problem initially contacting people who were interested in a talipes support group?  How do you promote the group on an ongoing basis?  How big a geographic area does your group cover?  How many members?  Do they stay in the group
long-term, or stop coming once the casting/surgery is over?  Is there an ortho. doctor involved with your group as an advisor?
I would be most appreciative of any assistance you can provide.  Please also send me a copy of your newsletter as soon as possible!
Thank you!
Patti Jensen
Seekonk, MA  USA

Our TIPS group started about 5 or 6 years ago with a couple of families getting together to share their eperiences with club feet. They started a social gathering, a 'coffee morning', once a month and that still continues. The number who attend these 'coffee mornings' are small, usually no more than 6 adults. Occasionally we have a guest speaker,  for example an expert on orthotics, and we can get more than a dozen families turn up.
TIPS is based in Melbourne, Australia and the newsletters and social gatherings have always been targetted at the families in Melbourne. However our mailing list of about a 100 does include families from many other cities in Australia. We have not mailed overseas because of the cost and because much of the inormation is of a local nature. However the 'stories' from the newsletters are being put on the website. I will attach 2 recent newsletters as Word documents to give you an idea of their format.
There is no doctor or advisor with the group. We are all parents of children with talipes just sharing our experiences, something which has truly been of immense help to so many.
To promote the group we have circulated brochures and posters to hospitals and medical centres. An Australian women's magazine wrote a story about TIPS about a year ago and that attracted much interest in our group.
My wife and I joined the group about 3 years ago when our Phoebe was born. I offered to start the website about a year later but it has taken me a while to get the site to be worth looking at.
When you do get your website started please let us know so we can put a link to your home page on our site.
Actually I would very much appreciate the web addresses of any other sites about club feet that you know about from your research.
I hope all goes well with the treatment for Tyler's feet.

Date:    7 Sept 1998
From:   Mardie Sheiken <Drmardie@aol.com>

Hi,
I just found your site and want you to know that I am very impressed!!!  i am 32 and was born with talips of my left foot.  My daughter who will be 1 on the 22nd of this month was born w/severe bilateral talipes.  I live in NYC and there is no such support group like yours.  I am hoping to start one and would appreciate any advice you can offer.  I would also love to be on your mailing list/e-mail list.
Thanks you kindly, Mardie Sheiken

Thanks Mardie for your response. We are pleased to hear that you were impressed with the TIPS site.
I will put your email on the site and I also encourage anyone living in NYC who reads your email to get in touch with you so you can start up a support group. You just need a few families to get together and start sharing your
experience with club feet.
All the best to you and your daughter.

Date:    5 Sept 1998
From:   Pat Ashton <ashton@fl.net.au>

Hi
I've just been reading through all the e-mail sent to t.i.p.s.  What an amazing array of procedures.  Our son Eli is featured in your story page.  Eli is now two and a half years and going fabulously.  He runs, kicks a ball, jumps and does all the "normal" active things a child of his age is capable of.  His last appointment with the surgeon in Melbourne was in April.  We were told that his tibia is twisted and that the outer parts of his feet droop.  At this stage they are just monitoring these things.  Apparently a lot of non-talipes children have twisted tibia without any problems.  I also wanted to mention something I forgot in our original tale.  When Eli was having his first operation, Phil and I waited in the parents room.  At that time the Atlanta olympics where on.  When we were talking to other parents there they mentioned that one of the American olympic basketballers had been born with talipes.  So it just shows that the sky is the limit for our brave little ones.
I'd be happy to receive e-mail from anyone about our experiences.
Best wishes Pat Ashton

Thanks Pat for giving us this update on Eli. I will add to the end of his story on the TIPS website. I hope you can keep us informed of how his feet are going and maybe even a photo some day?
All the best with getting his feet nice and straight!

Date:    5 Sept 1998
From:   Lisa Williams <wadew@mindspring.com>

Dear TIPS:
My daughter, Jade, was born with bilateral club feet August 1, 1988.  She was put into plaster casts at 1 day old and the casts were changed and the feet repositioned twice a week for 6 weeks.  Some progress was made, but not much.  At first her tiny little casts made her look like a ballerina en pointe.  I was asked if I wanted to keep her first casts and I refused.  I suppose I was still in shock.  I had never seen anything like club feet in my life.  I wish now I had kept the tiny casts to show her now.
Jade's first surgery was when she was 8 months old.  My poor sweetie.  I know she was in a lot of pain.  But the results were great!  Her feet were nice and flat although the tendons were still extremely tight.
The most unpleasant cast experience we had was during a vacation to Jade's maternal great-grandmother.  (Her great-grandmother lives in South Dakota.) Jade was in below the knee casts and the right one slipped.  Her toes disappeared right up inside the cast.  Well, we called her doctor (in Mississippi) and he said we had to have the cast removed.  We took her to the emergency department in a Rapid City, South Dakota hospital.  The technicians brought in the cast saw and started to work.  Jade's small nervous cries turned to screams of pain.  THEY CUT HER WITH THE CAST SAW!!! I screamed at them to stop, that they had hurt her.  The technician told me "don't worry, cast saws don't cut skin."  Let me tell you from
experience THEY DO!  The saw left a 2 inch gash in Jade's inside right ankle.   After we returned home to Mississippi, our doctor said they really should have stiched the wound.
At around two years old, we noticed Jade's feet turning back in and extreme tension in the heel cord.  Then at age three Jade had her second surgery at the Shriner's Hospital in Greenville, South Carolina.   This surgery was as rough for Jade as as the first one.  Her feet are flat, but apparently there was some overcorrection.  Her ankles seem to be sliding to the inside
(the heels).  Sometimes it looks like her ankles almost touch the ground when she walks.  So now, we are looking to a third surgery when she is 12 years old.  I can't remember the exact term, but they fuse the bones in the feet.  I am terrified for her.  I just don't feel comfortable with stopping the growth in her feet.  I've read some information on it and it scares me to death.
Jade is a happy child and very active.  I think one of my proudest days was when she learned to ride her bicycle!  Have you ever tried to ride a bike without flexing your feet?  I have.  Its very difficult.
So we wait for surgery number 3.  Any advice or comments are welcome.
Lisa Williams

Thanks Lisa for telling us about Jade's club feet and some particularly unfortunate experiences. It worries me to hear that Jade has more surgery to face at 12 years of age. Our little Phoebe has just turned 3 and her feet had been looking quite straight for some months and now all of a sudden I see her left foot starting to turn back in!
I will put your email onto the TIPS site and I hope you get some response from others who have had some experience with the fusing of the bones.
I wish all the best in getting Jade's feet nice and straight.

Date:    27 Aug 1998
From:   Kaye Holecek <czechers@intertech.net.au>

Hi Tom,
It's been a while since I first wrote, (we are actually on the net at home now....note the change of e mail address)
I've had my corrective boots made (they look much like ski boots or Doc Martens) with orthosis fitted and they seem to help with support and pain reduction, I also had a bone scan to check for arthritis and obviously, after so much bone manipulating surgery, I do have a bit of degenerative arthritis there, but not so bad at least !!
On reading the stories & e mail from parents of talipes kids, there seems to be a lot less operations having to be done now, which is wonderful. I know I had a lot of ops as a kid, but there was a lot of experimenting with talipes surgery in those days.
Love and best wishes to all, remember, you are all doing the best thing for your children and when you see your kids walking, running & playing you'll know it's all worth it, just as my folks did this for me......

Thanks again Kaye for your feedback. I have had orthoses inside my shoes for about 12 months now and they have indeed helped ease some back pain for me too.
All the best to you as well.
Tom

Date:    27 Aug 1998
From:   Fiona Henderson-Zuel <Fiona.Henderson-Zuel@det.nsw.edu.au>

I've just discovered your website, after searching amongst all the very technical information on talipes on the WWW.
My nearly-4 year old daughter was born with severe talipes equinovarus on one side and went through the usual plaster casts from day one and then surgery at 3.5 months.  At approximately 2.5 years old, it became obvious that her foot was turning in again, so we purchased straight-last boots, did exercises etc.  At her last visit a year ago, her surgeon threatened further surgery if things did not improve.  I am now trying to find any information on alternative treatments that other parents may have tried in a desperate attempt to avoid surgery if possible.  I realise that surgery may be the only option, but I'd like to investigate others before we commit to that.
Any information that you can provide would be most gratefully received.
Regards,
Fiona Henderson-Zuel

Date:    26 Aug 1998
From:    stuart.turner@MILLER-FISHER.CO.UK

Dear All,
I found your details on the internet and I hope you can help because as yet, I haven't found such an "association" in the UK.
When our Ortho. Surgeon/Consultant first saw my son's feet, he said it was the worst case he had ever seen, but that the prognosis was good.
Jordan has been having his legs strapped twice a week for the last 8 weeks, and although one foot has improved greatly, the other is still not so good.  He's now suggesting an operation to the achiles tendons on both feet with casts thereafter for approx. 3 weeks.
A second opinion (by a Paediatrician) has suggested that casts for 3 months would probably produce as good a result.
Have you any experience?  Can you suggest ?
Many thanks
Stuart Turner

Date:    24 Aug 1998
From:    Daniel Elzinga <elzingad@vianet.on.ca>

Hello from the other side of the planet!
I felt like doing a search tonight on a condition I was born with, talipes equinus (club feet). I never thought I'd be finding it in
Australia. I am 38 and am a fuly functional person.  I have however personalized this condition in my life. It has had its effect on what I am today. I will write up a story and send it soon. I think what you are doing is absolutely great. Keep up the great work.
Take care from Canada,
Dan

I sent an email earlier and now am sending my story. If you wish to put it up I would be delighted however if you don't it won't matter to me, I just thought it might be nice to give you anyway
Take care,
Daniel Elzinga 
P.S. The image is a colourized photo of my grandmother and I on my front porch in 1965.
-----------------------
I am not the parent of a child born with club feet, but I thought it might be nice for parents to read a story from someone born with it and learn that it is not all that bad. I was born on December 13, 1959. With talipes equinus in both feet. I don’t remember when I had the first operation, or how many it took to correct the problem. My parents tell me I went through 5 separate operations and I have the scars and photos with me in casts to prove it (see attached file). As a child I suffered
the ridicule of the school yard and was teased quite a bit. That I remember! Mobility was the real problem. This was endured though and my only memories are good. For example, playing with friends when I was on crutches; the popular game we played as children was cowboys and Indians or war, of course my crutches became my rifle. My grandmother still tells me the story of me climbing up on her roof  when I was in casts, and it being near impossible for her to get me down. I also remember
destroying my casts through my active youth. This is something to consider if your child is in casts and is as active as I was. I have no fond memories of hospitals but in retrospect it seems quite humorous. You see, most of the other children I saw in the hospital when I was there were in to have their tonsils out. Gee, that looked like a painful thing. Personally I have no memories of pain when I was in the hospital.
There is one scary memory though. I remember when I went to have my casts removed. The nurse brought out what looked like a power saw and I thought he were going to cut me. “Vivid memory of me screaming, and then him showing me that the machine could not hurt me, allowing me to touch it while it was running!”
As I mentioned earlier, mobility was a problem. When I was about nine years old I was out with my brothers one day and exploring the city. It was very difficult to get home. We had walked a long distance and my feet began to ache. Eventually I had to sit and rest while my one brother went ahead and got my parents to get the car to bring me home. This is still something that plagues me to this day, but I have a bike, so it is of little consequence. I can get anywhere, even distance.
Over the years I came to learn my limitations and was even able to participate in sports while in high school. I got into gymnastics and boy could I point my toes. A lousy dismount and broken wrist put an end to that. As I have said, I have no fond memory of hospitals and after being in a cast for 5 weeks for the broken wrist I decided to give up all sports involving any possibility of injury.
Now I am grown and happy and have little if any limitations in my life. Sometimes my feet still bother me, aching if I’m on my feet for too long. I am a professional artist, writer publisher and this does not require that I be on my feet all the time.
I know this is a simple story. The real point is that club feet are not something that will distroy a child’s life.  I had what I think was a pretty severe case. My younger brother, born in 1967, has one club foot. He only went through 2 operations. Sometimes I feel better off then him. His one foot is a full shoe size different then the other. (Snicker, snicker) We used to go buy shoes and he would get his pair by putting two different shoe sizes into on box! He is an honest man and does not do this any more. I think procedures have changed over the years and it must be quite a bit easier now for all.
Thank you for allowing me to share my story.
Take care,
Daniel Elzinga

Date:    23 July 1998
From:    Leo D  <LALI@classic.msn.com>

Date:    27 June 98
From:    Leo D  <LALI@classic.msn.com>