Talipes Information and Parental Support Group
 

Email Correspondence 1997

Date: 22 Aug 1997
From: Tricia Chapman <bigsista@iname.com>

Tom  my name is Tricia and I have club feet.  I am 37 yrs old and think that it is fabulous that some one has finally organised a support group. People often tell me how much they admire my attitude towards my feet, for me club feet is an ongoing issue.. ops ahead even now. I tell them that it is not me they should be congratulating but my parents.  They are the true heroes of this situation.  They looked for alternatives, never got discouraged and taught me to explore all my boundaries in a realistic way.  This didn't mean that I shouldn't push the limit on anything.  It just meant that there would be times when perhaps I had to learn to acknowledge that determination and blind stubborness couldn't always prevail.  That these were not my failures that sometimes what I
learnt from the negatives where my greatest achievements.

So I am here to tell you that it is you the parents who are the brave ones.  I take my hat of to all of you... and wish you and your children all the luck and happiness in the world.... Tricia

P.S this is my flat mates computer so if any one wants to talk just note attention Tricia on the email.
 

Hi Tricia
Thanks for your encouraging email and my apology for the long delay in getting back to you. We have had some problems with our ISP. Please note that TIPS has its own email address now.

It is very pleasing for me to hear from an adult who was born with club feet. There is no doubt that 47 years ago my parents were certainly brave and I have such admiration and gratitude to them for their commitment and perserverance in getting my foot straight. From the stories my Mum has often told me about my first years I know we have had it very easy with our Phoebe.  Beata, my wife, is keen to write down Tom's Story for the TIPS site so stay tuned.

We have included your email in our recent TIPS newsletter here in Australia because it sends such an encouraging message to all the parents who are so anxious about their talipes' children. I have also taken the liberty of including your email in a new page on the TIPS web site.  The site has been upgraded and I am hoping to generate some email dialogue amongst the parents who go searching for information on the Net. If you are not happy to have your email published in this way please get back to me as soon as you can and I will remove it immediately. However I suspect it just might attract some of the interest and 'talk' I think you are looking for.

Thanks again for your response to our TIPS site.
Tom
 

Date:   Tue, 22 Jul 1997
From:  Alistair F Hudson <xmr66@dial.pipex.com>

Our little boy Cameron was born in May this year with bilateral eqinovarus talipes. He was placed in splints immediately but unfortunately the splints have been rubbing causing his skin to bleed and create sores. Our consultant has therefore decided to operate next month (Cameron will be just 12 weeks), obviously we are both very worried and would love to hear from other parents who may have undergone a similar experience.

My father also had talipes equinovarus although we have been told that it is not hereditary, I was wondering if anyone else had the condition in the family more than once ?

Unfortunately there do not appear to be any support groups in the U.K so we'd be really grateful for any help that TIPS can give us.

Thanks

Liz & Al Hudson
 

I certainly believe that talipes can be hereditary. I was born with talipes in the right foot and now our
2 year old daughter has bilateral talipes. As far as we (TIPS) can ascertain talipes occurs in about
1:1,000 live births and approximately 3:100 births where there has been a previous family incidence.
(Note that these figures are different to what is on the TIPS home page - I must get around to
making a few changes to the TIPS pages very soon!).

I can understand how worried you must be for little Cameron.  I can remember so vividly how
anxious and worried that Beata and I were before Phoebe's operations between 7 and 8 months of
age.  If it can be of any comfort to you as you prepare for Cameron's operations, we found that
Phoebe bounced back to her normal self in only a few days after each operation. Even the plasters
did not seem to bother her. By day 2 she was kicking and dragging her feet and plasters around as
though they had always been there.  I do believe now that she was so young that she would
completely forget the whole experience very quickly.  I was actually more concerned about Phoebe
having operations at 2 because she is so much more aware and yet her language skills are not
sufficient for us to coomunicate to her why and what must happen. However we are relieved to have learnt recently  that there will be no operations now. The doctors believe Phoebe's feet which are not quite straight yet will grow straighter and if by the time she is 4 or 5 and they are not much better
then further operations will be considered.

I am wondering if you would like us to put your email on the TIPS site where you might get more
responses and there might also be some interest from parents in the UK in forming a support group.

We hope all goes well with Cameron's operations and we hope we will hear more from you.

Tom (and Beata) Clark  

Date:  Sat, 12 Jul 1997
From: Ray McKenzie <usc@ns.sympatico.ca>

Thank you for the information on your web-page. If you have ANY information on the what might be considered "the best" procedure to follow in helping an infant with club feet, please let us know. We have recieved some very mixed options on the "best" method/procedure to follow.
--
Ray McKenzie, Agency Director
U.S.C. Education Savings Plans

Thanks Ray for your response to the TIPS web page. Unfortunately TIPS is agroup of parents who have no medical expertise so we are unable to give you the "the best" procedure to help with club feet. Our main purpose is to share the various treatments our own children have experienced in the hope that parents who know nothing about club feet will gain a broad understanding of what they might be facing in having their child treated.

I can understand any frustration you might have in not knowing what is best or what will happen in the future. Our own experience bears this out.  My wife and I saw a paediatric orthopaedic surgeon several months before our Phoebe was born having recognised talipes from the ultrasound. This doctor is regarded as one of the best in Melbourne (Australia) for treating talipes and we have been very happy with the operations and his treatment however we have found great frustration in getting information from him and he will not commit himself to what will happen after the next visit/procedure. He firmly argues that every child is different and every case of talipes can take a different course. So long term we do not know exactly what will happen with Phoebe's feet.
(Phoebe is now 2 and one foot is looking good and the other foot the doctor believes may grow to be straight, so we are having no further treatment until she is 4 or 5 and then if it is not much straighter there will be more operations we suspect.)

We have found talking to other talipes' parents and hearing about many, many cases  has really helped us to be better prepared for a range of possibilities. But as for "the best" procedure you will need to talk to a doctor or better still several doctors.

We wish you all the very best in seeing your baby through some difficult and uncertain times. We do hope to hear some more from you and maybe one day you could send us your child's 'story'.

Tom (and Beata)

Date:  Tue, 24 Jun 1997
From: "Cheryl Ann Bean" <eden@usaor.net>

Tom,
        I'm so glad I found your Web Page! Our baby has a right clubfoot and I am desperately trying to learn as much as I can about this so that we can intelligently make the right decisions on treatment! Please send me information on subscribing or learning more about TIPS and Talipes.

               Thanks,
                        Cheryl
                        Pittsburgh, Pa.  USA

Thanks for your interest in our TIPS site and in the Newsletters. We know how desperately you would want to find out as much as you can about clubfeet.  TIPS is a group of parents who have children born with clubfeet and are happy to share our experiences with this condition. We really can't offer you much by way of medical advice. Doctors are the best people to talk with about medical treatment. However there is much you can learn about  coping and caring for your baby and being supported.

I will send you our most recent newletter as an attachment in Word 6/Word 7 format. Please let me know if you have any trouble receiving or reading the newsletter and I will post it to you.

We distribute our newsletter every second month to our members who are asked to contribute $15 (Aust) per year to cover the cost of producton and postage. So let us know if you are interested in becoming a member.

The Feature Story in each letter is the main interest for our parents and this particularly applies to the parents who have contacted us from the USA and from the UK. We are encouraged by the international interest our TIPS site is receiving and we are considering giving the Newsletters
a  more international flavour. So feel free to make suggestions or some contribution.

Our daughter Phoebe saw the orthopaedic doctor today and we were expecting to hear that she would need another operation (tendon release) on her left foot. However, we have wonderful news that both feet are progressing well, she does not have to wear splints any more, she does not have to go back to the doctor for another 6 months, there will be no operations until she is at least 4 or 5 years old and then only if the feet have not corrected themselves. We are very happy parents tonight!

We wish you all the very best in seeing your baby through some painful and trying times. We do hope to hear some more from you.

Tom (and Beata)