Re: reintro: 3.5 year old daughter with untreated bilateral clubfeet

September 27, 2005

Oh Joyce you literally bring tears to my eyes. If Dr. Ponseti isn't a " God

Thing " I just don't know what is! We all look so forward to hearing more from

you about your lovely daughter and her treatment/progress, etc.....I just feel

so happy right now for you!!!!!! I come to Iowa for check ups on Oct. 12th, I'd

love to see you if possible. I have two boys, both with bilateral cf.

shawnee

reintro: 3.5 year old daughter with untreated

bilateral clubfeet

Hi everyone,

I only posted once and it was back in early August right before we

came out to Iowa. Thanks for those of you that gave me your input to

my question. We brought our little , , home from China on

Thanksgiving Day last year and she is now 3 1/2 years old. She was

born with bilateral clubfeet and she was walking, running, jumping,

and climbing on her feet since we got her. She does a great job

keeping up with her brother who started kindergarten this year.

Before we went to get her we knew she had received no treatment for

her clubfeet so I began researching doctors before we ever brought

her home. My quest was to find a doctor who had experience treating

children who had actually walked on their clubfeet for some years

before treatment. As you all know, that is a challenge in America

because we treat our children right after they are born. My search

led us to a doctor in Utah that had experience with older children.

He had successfully corrected a 9 year old boy who had walked on his

clubfeet all those years through surgery. We are from Idaho, so we

drove to Utah for our first appointment in January. At this point

our daughter was scared to of any medical person. They told us

her case was very severe and she would need 3 months of casting with

cast changes during that time. I asked if they did the Ponseti

casting method and they said yes. We went back in May for a foot

pressure study in the GATE lab which was very interesting and they

told us they would call us with surgery dates for us in two weeks

(they had decided to divide her surgery into 2 sessions the second

one 6 weeks after the first because her case was so involved). Six

weeks went by and we still didn't have a date so I called and they

said they wouldn't sit down to schedule any more surgeries until

August and her doctor was booked out anyways till late fall/winter.

I was so frustrated with this delay as I felt that was too long for

her to wait medically plus I was going through the special booties I

had made for her like crazy since she couldn't wear shoes and I knew

it would be even harder in the cold weather. At this point I told my

husband maybe this is God's way of telling us we really aren't in the

right place. He said where else are we going to go as we had already

done the research a year and a half ago before we brought her home?

I said I didn't know but I needed to do this for my own piece of mind

even though we would probably find out we were still in the right

place.

So I began my search for doctors using the Ponseti casting method and

I e-mailed about 20 doctors that had that qualification telling them

briefly about 's situation and asking if they had experience

with older children with untreated clubfeet. I didn't tell them

anything about the other medical advice as I wanted their own opinion

without the influence of any other doctor's opinion. Only 3 e-mailed

me back that they had this experience, so I kindly thanked the others

for their time and continued to talk to the other 3 docs. They were

in Missouri, New York, and Arizona. They were all so nice and said

they thought she would respond well with the casting method although

she would probably need some surgery. I was so impressed, especially

with the docs in New York and Missouri. I knew we were going to

definately switch doctors however I didn't know which one.

The nurse coordinator in Utah called back and I told him we had done

some more research and we were wondering if our doctor would consider

casting her before surgery to gain more flexibility and hopefully

minimize the amount of surgery needed. When he got back with me he

said the doctor told him he didn't feel we'd gain anything from the

casting, but he'd do it if we really wanted to. He then told me how

they would do it and I immediately questioned him on some things that

didn't sound quite right for it to truly be the ponseti method. He

then told me, well you won't find him listed as one of the trained

Ponseti doctors, but he has attended some of his clinics. I was

really mad, as I felt they had lied to me in the beginning over a

year ago when I asked if he was Ponseti trained. I knew then we'd

never go back. However, I didn't cancel anything with them as I

really didn't have anything else lined up yet.

At this point I felt we would probably go to Missouri to see Dr.

Dobbs, but I still had a few more questions. It was a Friday and I

thought to myself this is crazy here I'm making sure each doctor I

talk to is trained in the Ponseti method why not try to find the man

himself who developed this method, as I thought it was named after

him. I knew nothing about him and so I found his phone number and

called him. I thought this is a shot i n the dark, but what does it

matter at this point. Joyce answered the phone and after just

talking to her a few minutes she said he's right here in his office

I'm sure he'll take your call if he's not busy. Sure enough we

talked for about an hour and I was floored. I couldn't believe it as

I truly didn't expect for anyone to answer the call. I asked him if

he'd do a consultation for us on her case and he said sure. I then

asked if he wanted me to e-mail him some pictures and he said no that

he would learn more by holding her foot in her hand. At that point I

knew he was the doctor for us. I then asked him if he'd take her

case on and he said yes. I asked him when he could start working

with her and I was amazed when he said as soon as you can get here.

He told me he was so sorry we got such bad advice and he felt she

needed to be treated right away. After talking to Dr. Ponseti, her

nurse coordinator from Utah called to tell us that her doctor wanted

another appointment with us but it wasn't for it was for my

husband and I. I thought that was strange and asked why and her

nurse said the doctor wanted to talk to us about the severity of her

case as he felt even after all the surgeries she would go through he

felt she would still very likely be an amputation case.

The rest is history. Four days later on August 16th my son, ,

and I hopped on a plane and came to Iowa City where we stayed at the

RMH for 3 cast changes before we went back to get my son started in

kindergarten. I only got to be home with him for 2 days of

kindergarten and then and I drove back here (1531 miles) with

my dad who flew back the next day after we arrived. We decided with

rental car fees it would be more economical to drive. So needless to

say that took off a few days of my home time, but we all do what we

need to do to make it work. We've been out here a total of 6 weeks

now and it looks like we won't be able to return home till probably

the middle to later part of October. She'll have surgery at the end

with both feet having the tenotomy, the right foot having a tendon

transfer and also a plantar fascia release. There is a possibility

that she also has some extra bone growth that has developed from all

the walking she did on her feet before, but I believe they'll handle

that in another surgery later on. They will do x-rays after 2 more

cast changes and know more.

Dr. Ponseti truly is a miracle worker for us. We can never thank him

enough for all he is doing for her. He makes feel sooo

special everytime she comes in and she loves going to get her new

casts on. I have some incredible pictures of him with her and you

can just see the genuine love for children in his eyes. It is

amazing to see her excitement with the transformation of her feet

with each cast change. Her goal in life as a toddler is to wear

sandals. She explains her casts to everyone by telling them that the

man is making her feet straight for sandals. He has said she is the

oldest untreated child he has ever treated. We are on her 9th cast

now and have many more to go. You all are incredible, I only wish I

had found this group when we first learned about our daughter. Take

care and I plan to stay current with this group now and up on all

that's happening. I hadn't logged till now since I first got

accepted to the group before we came out.

Sincerely,

Joyce &

September 27, 2005