Re: Adopting a bilateral club foot baby from China

[Guest guest]

Welcome to the group and congratulations on your pending adoption. I

know you mentioned on the other group that you are in contact with

Dr Ponseti. He is currently and succesfully treating a 4 year old

Chinese girl(recently adopted) who I believe received no prior

treatment. Her name is and hopefully her mom will see this

post and share her story.

There are two certified ponseti doctors in china according to dr p's

website-

China

Liu Zhen-Ting

Chief Physician

Wenmin Road 70#

Guilin, Guangxi, China 541002

Tel: 2820816

Wang Zhigang, M.D.

Cai Haiqing, M.D.

Pediatric Orthopedic Department

Shanghai Children's Medical Center

1678 Dongfang Road

Shanghai, P R China 200127

Tel: 86.021.58732020.6517

gangqing@...

clubfootwang@...

However, you may want to ask Dr Ponseti if it would be better to

just wait before you begin the process until you have your son in

the US. I am from Indiana so I can not suggest any southern CA

doctors but I would say if at all possible, take your son to Dr

Ponseti's clinic and his team of physicians. They have the most

experience especially with older children. I know more families will

pipe in. Again welcome to the group! Congratulations again and keep

in touch!

Kathleen

mom to david 18 months bcf fab 12/7

>

>

> We have just recently begun the process of adopting a 1 year old

boy in

> China who has bilateral club feet.

>

> I know this is rather far fetched, but we are looking for

assistance to

> help him receive treatment by the Ponseti method while he is in

China.

> Otherwise, they may proceed with surgery. If any one has any

contacts

> who might help identify a person who could do this, we would

greatly

> appreciate it.

>

> We are also looking for the best trained physicians in Southern

> California who will be able to assist once we get him home. Does

any

> one have any recommendations? (He will likely be almost 2 years

old

> before we can bring him home. [] )

>

> Thanks for any assistance,

>

> Craig

>

> I suppose because I am new to the group I need the group owner to

> approve my message. However,there is no explaination on how to get

> approval. Hopefully it will get there. Thanks again.

>

>

>

>

[Guest guest]

Craig,

I know that there were some Chinese doctors who received training in

the UK recently. I would recommend that you email Naomi (in

Manchester, UK) to see if she can help you find out if there are any

Chinese doctors who are using the method near the orphanage. Her

email is naomi.davis@... (naomi.davis @ ponseti.org.uk)

It's not a far-fetched idea if the doctors are near your son. Or if

they can convince the doctors who are in charge of the children at

the orphanage that it would be better to leave his feet untreated

than to conduct the surgery with the intent of having them corrected

at an older age when he's adopted.

There is information about two of our families who adopted older

children with clubfoot from China at this site:

http://members.tripod.com/ponseti_links-ivil under the section about

older children.

For an older child or complicated case in California, I would highly

recommend Dr. Colburn in Pleasanton/Walnut Creek as he is

the doctor with the most experience with the Ponseti method there.

He's been using the method for over 6 years very successfully.

I hope this helps some.

Regards,

& (3-16-00, left clubfoot)

[Guest guest]

Thanks for the ideas Kathleen, & . We have also started

looking in China as well through some of our China contacts from a

previous adoption. Both of the doctors on Dr. Ponseti's list are

quite a ways away from our son.

I have had contact from Dr. Ponseti concerning what treatment we

would do if we were to wait and do it once our son (no name yet) came

home. Based on the single photograph of the feet we sent him, he was

quite positive. However, he expected 10 to 12 casts spaced 5 to 7

days apart. How could anyone possible stay in Iowa that long? Or do

you travel back and forth every week?

It also makes me nervous having a doctor treat him in China where I

have little to no say in what they do and how he is cared for at

home. Can you imagine what it must be like to wear a brace in an

orphanage? But it also concerns me to think that he will be almost 2

and still have no treatment. I have sent a follow up email to Dr.

Ponseti to see what he might recommend that they do for him if they

don't treat him right away.

I also heard from Dr. Mubarak in San Diego. His assessment based on

the same photograph we sent was: " we would start with some casting

potentially and then usually surgery to perform posteromedial

release. "

We are also waiting for a reply from a doctor in Long beach who was

on Dr. Ponseti's list.

We are still very early in the process and appreciate your input and

ideas.

Craig

[Guest guest]

Craig,

My son's doctor, Dobbs in St. Louis, just came back from

teaching the Ponseti Method in China. I've emailed him to see if he

has any recommendations other than those on Dr. Ponseti's list (I see

Kathleen gave you their names). I'll let you know if I hear of anyone

else.

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 14hrs/day)

>

>

> We have just recently begun the process of adopting a 1 year old boy in

> China who has bilateral club feet.

>

> I know this is rather far fetched, but we are looking for assistance to

> help him receive treatment by the Ponseti method while he is in China.

> Otherwise, they may proceed with surgery. If any one has any contacts

> who might help identify a person who could do this, we would greatly

> appreciate it.

>

> We are also looking for the best trained physicians in Southern

> California who will be able to assist once we get him home. Does any

> one have any recommendations? (He will likely be almost 2 years old

> before we can bring him home. [] )

>

> Thanks for any assistance,

>

> Craig

>

> I suppose because I am new to the group I need the group owner to

> approve my message. However,there is no explaination on how to get

> approval. Hopefully it will get there. Thanks again.

>

>

>

>

[Guest guest]

Craig,

Even if he is unable to get treatment before he is 2, it is unlikely

that a Posteriomedial Release (PMR) would be necessary. At 2 he

*should*, if treated by expert hands, be able to avoid surgery except

for the tenotomy that 85% of children have. The tendon transfer

(ATTT) that is needed in about 10% of cases would most likely still be

an unknown as they don't normally do this procedure until about age 3.

The doctors who are very experienced in the Ponseti method have been

having much success correcting previously untreated feet at older and

older ages without the need for major surgery. The PMR is a very

invasive surgery and is one that tends to create stiff and painful feet.

Although Dr. Mubarak is on Dr. Ponseti's list, if he is setting you up

for big surgery without even seeing your son's feet, I would be leery.

A true Ponseti purist will usually do whatever he can to avoid these

types of surgery and they generally show their optimism from the outset.

People do stay in Iowa for months at a time, when needed. Some people

travel back and forth - it's just whatever works for your family.

There are airlines that can fly you for free for medical care, and

there is a Mc House right on campus at the University of

Iowa.

Hope this helps,

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12-14hrs/day)

>

> Thanks for the ideas Kathleen, & . We have also started

> looking in China as well through some of our China contacts from a

> previous adoption. Both of the doctors on Dr. Ponseti's list are

> quite a ways away from our son.

>

> I have had contact from Dr. Ponseti concerning what treatment we

> would do if we were to wait and do it once our son (no name yet) came

> home. Based on the single photograph of the feet we sent him, he was

> quite positive. However, he expected 10 to 12 casts spaced 5 to 7

> days apart. How could anyone possible stay in Iowa that long? Or do

> you travel back and forth every week?

>

> It also makes me nervous having a doctor treat him in China where I

> have little to no say in what they do and how he is cared for at

> home. Can you imagine what it must be like to wear a brace in an

> orphanage? But it also concerns me to think that he will be almost 2

> and still have no treatment. I have sent a follow up email to Dr.

> Ponseti to see what he might recommend that they do for him if they

> don't treat him right away.

>

> I also heard from Dr. Mubarak in San Diego. His assessment based on

> the same photograph we sent was: " we would start with some casting

> potentially and then usually surgery to perform posteromedial

> release. "

>

> We are also waiting for a reply from a doctor in Long beach who was

> on Dr. Ponseti's list.

>

> We are still very early in the process and appreciate your input and

> ideas.

>

> Craig

>

[Guest guest]

>

>

> We have just recently begun the process of adopting a 1 year old

boy in

> China who has bilateral club feet.

>

> I know this is rather far fetched, but we are looking for

assistance to

> help him receive treatment by the Ponseti method while he is in

China.

> Otherwise, they may proceed with surgery. If any one has any

contacts

> who might help identify a person who could do this, we would greatly

> appreciate it.

>

> We are also looking for the best trained physicians in Southern

> California who will be able to assist once we get him home. Does

any

> one have any recommendations? (He will likely be almost 2 years old

> before we can bring him home. [] )

>

> Thanks for any assistance,

>

> Craig

>

> I suppose because I am new to the group I need the group owner to

> approve my message. However,there is no explaination on how to get

> approval. Hopefully it will get there. Thanks again.

>

>

>

>

[Guest guest]

is my daughter that Kathleen is talking about in this

response. We are soooo proud of her. I did just e-mail you a

response Craig about your posting of your little boy earlier this

morning and I'm sorry I haven't had the time to check in with this

group for over a month. You all are absolutely incredible and I feel

so fortunate to have met those of you that were out in Iowa when

and I have been over the course of the last 8 months. I feel

so fortunate for the friends I've gained through this group. I'm

still reading through postings and responding from where I left off.

Thanks Kathleen for writing a bit about my daughter, I just wish I

had seen the posting right away. I'm trying to get caught up these

days. Take care!

Joyce

Proud Mommy of (4 years old) bcf - almost fully corrected

> >

> >

> > We have just recently begun the process of adopting a 1 year old

> boy in

> > China who has bilateral club feet.

> >

> > I know this is rather far fetched, but we are looking for

> assistance to

> > help him receive treatment by the Ponseti method while he is in

> China.

> > Otherwise, they may proceed with surgery. If any one has any

> contacts

> > who might help identify a person who could do this, we would

> greatly

> > appreciate it.

> >

> > We are also looking for the best trained physicians in Southern

> > California who will be able to assist once we get him home. Does

> any

> > one have any recommendations? (He will likely be almost 2 years

> old

> > before we can bring him home. [] )

> >

> > Thanks for any assistance,

> >

> > Craig

> >

> > I suppose because I am new to the group I need the group owner to

> > approve my message. However,there is no explaination on how to

get

> > approval. Hopefully it will get there. Thanks again.

> >

> >

> >

> >

[Guest guest]

I originally sent this out under a different subject line above so I

thought I would resend it as a response so it get's linked to your

original message you posted Craig. I did want to add that there is a

wonderful lady from Australia named Joyce working hard in China to

help special needs kids with severe medical needs and she runs a

house for these children. She has had clubfeet children that have

needed to be treated in the past and presently has a little boy with

very severe clubfeet so she knows of some really wonderful Ponseti

trained doctors over there who she works with. I will be happy to

give you all that contact information if you want it. Good luck to

you! What a lucky little boy your son is to have you. My earlier

message I sent is below in case you didn't see it. Thanks - Joyce

Congratulations Craig on your little boy! I am proud to say that we

brought our daughter, , home from China on Thanksgiving Day

2004 at 34 months old with bilateral clubfeet. She is absolutely the

most amazing, beautiful, and fun little girl. I am curious if your

son is possibly Sun Ya Kun at the SWI in Inner Mongolia? I made some

phone calls in January to people that work closely with the

orphanages in China and have the connections over there to try to get

him to a Ponseti trained doctor rather than allowing them to take him

to surgery. Even if this little one is not your son, I would love

to talk to you about your son and share the info on the people I

contacted in China so maybe they can help your son. You can contact

me at cjjidaho@... . We feel so blessed that is a

part of our family. She truly is the most precious gift and we are

so thankful for her. She is so fun and full of life and has handled

all the medical treatment incredibly well, especially coming home so

scared after her previous medical experiences in China (all the

ridiculous testing they put these kids through – they did an

unnecessary brain scan which was read wrong over there telling us she

had a problem with her brain a week before we flew out to get her).

I was so thankful she had not received any medical treatment in China

for her clubfeet. And in regard to her brain, there is absolutely

nothing wrong with her although in Utah the neurologist was watching

her for possibly having a mild form of CP, which they do not believe

to be true now. She's sharp as a tack!

It's amazing the wonderful people and new friends we've made in our

journey to treat her clubfeet. Before I tell you a little of our

story please keep in mind our daughter had walked on her clubfeet for

almost two years by the time we went to see Dr. Ponseti. 's

clubfeet we're considered severe and she was also the oldest,

untreated child he has ever treated so her treatment was quite

lengthy and more involved compared to most children. However, he

definitely worked a miracle on her sweet little feet. He is our

hero!

We live in Idaho and first traveled to Salt Lake City for treatment

after bringing home from China. This doctor had successfully

treated an 8 year old boy from Mexico with clubfeet that looked just

like 's. They said she was too old to treat with the Ponseti

casting method and would need to be corrected through a combination

of major surgery first (they had planned to do the postmedial release

and all ) and then a few castings just like they did for the little

Mexican boy and other older children. She would possibly need a few

more surgeries as she grew. Our local Ponseti trained doctor here in

town, who I've heard nothing but great things about, would not even

consider taking her case on because he just works with the babies and

she was too old. (I believe a good doctor knows their boundaries and

I applaud him for that.) could walk, run, jump and all with

her sweet little feet. However, after working with the doc in Utah

for many months they called us to tell us they felt her case was so

severe that she would probably end up being an amputation case, even

after all the surgeries and treatment they had planned for her.

Luckily, we had already begun doing more research and ended up

finding Dr. Ponseti and flying out to begin treatment. After 17 cast

changes and a 2.5 hour surgery (ATTT- a tendon transfer- and tenotomy

on both feet) she got her casts off in January and today she is

walking, running, jumping on straight, beautiful, pain free feet. I

can buy her sandals and light up shoes in the store that I never

could before. Her left foot has turned out perfect however, we still

have a problem with her right foot(which was more severely crippled

to begin with) where we will be returning for one more surgery in the

next few months. This was a little unexpected, however, it's amazing

when you look at how Dr. Ponseti has transformed her feet. He is a

miracle worker!!! I'm just so thankful we didn't stay with the Utah

doctor. Please don't let any doctor do surgery on your child's feet

once you get him home before doing the Ponseti casting method with a

correctly trained doctor. I know you have no control over what takes

place in China before they put your son in your arms. Your son is so

much younger than our daughter and his treatment will most likely be

more simple than 's.

Please feel free to contact me and I will be happy to give you the

contacts I have to hopefully help your son in China. Again

congratulations on your boy! I will be happy to share pictures of

's progress with you if you would like and help you and your

family in any way I can. Take care!

Sincerely,

Joyce

Proud Mommy of Faith – 4 years old

>

>

> We have just recently begun the process of adopting a 1 year old

boy in

> China who has bilateral club feet.

>

> I know this is rather far fetched, but we are looking for

assistance to

> help him receive treatment by the Ponseti method while he is in

China.

> Otherwise, they may proceed with surgery. If any one has any

contacts

> who might help identify a person who could do this, we would greatly

> appreciate it.

>

> We are also looking for the best trained physicians in Southern

> California who will be able to assist once we get him home. Does

any

> one have any recommendations? (He will likely be almost 2 years old

> before we can bring him home. [] )

>

> Thanks for any assistance,

>

> Craig

>

> I suppose because I am new to the group I need the group owner to

> approve my message. However,there is no explaination on how to get

> approval. Hopefully it will get there. Thanks again.

>

>

>

>

[Guest guest]

Craig,

congratulations for your little boy!

It will be great, when you bring him home at last...

Don't know whether you already know, but in 2004 there was

a Ponseti-Clubfoot-Project established in Guilin/China by the

physiotherapist Iris Lohan (Germany) with the help of

Dr. Marc Sinclair (Germany) and Dr. Norgrove Penny (Canada).

They all went to Guilin and trained doctors and physiotherapists

in the Ponseti method. Even if the text is in German, the photos

of the project may be interesting for you under

http://www.klumpfuss-info.de/china/china.html

Iris Lohan actually is back to China, so I hope she will be able

to tell you where the Ponseti method meanwhile is practiced over

there, hopefully as well somewhere in the near where

your son lives.

You can contact her on iris@...

or as well Dr. Sinclair on marc.sinclair@...

Hope this might help a bit.

Best wishes

>

>

> We have just recently begun the process of adopting a 1 year old

boy in

> China who has bilateral club feet.

>

> I know this is rather far fetched, but we are looking for

assistance to

> help him receive treatment by the Ponseti method while he is in

China.

> Otherwise, they may proceed with surgery. If any one has any

contacts

> who might help identify a person who could do this, we would

greatly

> appreciate it.

>

> We are also looking for the best trained physicians in Southern

> California who will be able to assist once we get him home. Does

any

> one have any recommendations? (He will likely be almost 2 years

old

> before we can bring him home. [] )

>

> Thanks for any assistance,

>

> Craig

>

> I suppose because I am new to the group I need the group owner to

> approve my message. However,there is no explaination on how to get

> approval. Hopefully it will get there. Thanks again.

>

>

>

>