to mr. martin egbert -- advice on a 4 year old Filipino child with club foot

[Guest guest]

Dear ,

Hello. I am a new member of the no surgery for clubfoot e-groups. I am

Paz from the Philippines. I have been reading the messages in

our e-groups and was hoping you could help me.

I have a son, JM, who is now 4 years old. He was born with a right

club foot. He underwent casting since 9 days old and had a tendon

release surgery (it is 6 inches long) when he was about 5 months old.

The doctor required another surgery but when we scheduled it his blood

tests did not permit him to go through the operation. We haven't

scheduled that 2nd operation since then because fear grew in me of

whatever might happen to that 2nd surgery. I now fear that his right

foot has a relapse and I was wondering if Dr. Ponseti can still treat

him even if he has undergone one surgery and that he is now nearly 5

years old? I am really hoping that you can advice us on what to do or

what could be our options based on your personal experiences with the

Ponseti method.

We are also looking for a Ponseti Treatment Practictioner here in the

Philippines but it seems there's no one capable here. Maybe you can

also advice us if you know of any doctor using the Ponseti Method in Asia.

Thank you very much. We hope to hear from you soon.

best regards,

Paz

> 9:30 " Worldwide Approach to Clubfoot Treatment "

> --Norgrove Penny, MD

>

> Dr. Penny presented a great summary of the worldwide issue of

> 140,000 clubfoot children being born per year with 80% of them in

> the developing world. He reviewed the Uganda Clubfoot project and

> other projects in Malawi, Ghana, Nepal, China and training being

> done by the U of Iowa in many Central and South American Countries.

> They are working on developing a coordinating center that can help

> organize donors, countries, doctors, supplies, training materials,

> etc. with areas that want a program. They are hoping to take it to

> the World Health Organization and get their endorsement of the

> general method of conducting it. Having one centralized

> organization to deal with the administrative stuff will let the

> doctors deal more with going out and doing it as well as making it

> easier for more doctors to go.

>

> One of the other great things at the meeting was a parent who is at

> the Mc house with her 3 year 9 month old adopted

> daughter from China with untreated clubfoot. Dr. Ponseti is

> treating her and they are hopeful that it will work to at least

> minimize any possible surgery and push back the time frames of when

> using the Ponseti method is still possible.

>

> Dr. Penny explained that he and Dr. Mark Sinclair from Germany went

> to China to begin helping a few centers learn about the Ponseti

> method. He said that because of China's one child rule, that often

> children with disabilities are discarded to die while the luckier

> ones may get to orphanages. They are hopeful that if the Ponseti

> method catches on there, that more children will survive, be treated

> and adopted.

>

> One doctor mentioned that she was occasionally brought in to

> counsel " high risk " pregnancies. She said that when the ultrasounds

> detect a condition like clubfoot, often the parents are sent to

> a " high risk " OB doctor who gives them some additional information

> and offers advice on alternatives, including abortions. This doctor

> said that the first time it kind of shocked her to go into talk to a

> pregnant mother who had been told that abortion was an alternative

> to having a baby with clubfoot. She said she tried to very

> clinically tell the pregnant mother that most likely her child was

> normal and that current Ponseti method treatment would mean that the

> child would be functionally normal in every way. The doctor noted

> that we need to get this information out to prospective parents so

> that they don't make assumptions based on outdated and incorrect

> treatments.

>

> On Saturday, the older children were examined including two - 49

> year olds, Ross Snyder and a guy from the Atlanta Track Club, who

> had both been treated by Dr. Ponseti in the 1950's. Also, a 25 year

> old 1st year medical student at the U of Iowa that Dr. Ponseti had

> treated a long time ago. There were also lots of kids from about 7

> on down. There were probably about 15-20 who raced and about 50-75

> who watched. There had been a Friday night dinner of parents at

> Bennigans in the Coralville Mall. On Saturday, the parents had

> snacks in the lounge area of the lower level while the older

> children were examined and prior to going over to the races. The

> races were really cute as Dr. and Mrs. Ponseti sat in chairs at the

> finish line about 25 yards from the start. The races were divided

> by age groups and were just for fun. There were a couple of

> children racing in casts that did great. Although the younger

> children went just the 25 yards, the 5-7 year olds decided that they

> needed to use the full quarter mile track and they just took off for

> the full distance once around. The final race was the two 49 year

> olds who took off and ran the full quarter mile lap around the

> track.

>

> It was a great 2 days and fun to meet a number of other parents

> there. I hope that I have communicated what each doctor said

> accurately. Please remember that I am a parent and not a doctor and

> this is my understanding of what was said during the meetings. It

> is possible that I may have misunderstood someones presentation and

> or not recorded important details of what they presented, so please

> do your own research on this information. I hope that this

> information is of help to others.

>

> , Allyson and (born 3-17-99)

> http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/egbert.html

>