anyone else experience club foot along with hand deformity?

[Guest guest]

We keep getting more and more concerned with the upcoming birth of our

son. I posted back a few weeks ago when we found out he has bi

lateral club feet. Now it seems that he also has a deformed hand. I

was wondering if any other parents have experienced this? I am 34

weeks along and have been on bed rest for 3 weeks. The anticipation

is overwhelming. If anyone can help please let me know! Thank you!

[Guest guest]

Hi-

congratulations on the upcoming birth of your son. My son david was

born on 8/28/04 with bilateral clubfeet and abs affected hands and feet

(amniotic banding syndrome). Both of these conditions were a complete

surprise to my husband and I and our doctors. Within 24 hours,

had a full genetic screening, met our pediatrician, and was introduced

to a Orthopedist doctor-who happened to also treat my fil and my sil.

The ortho handled david's clubfeet for the first 6 weeks-then referred

us to a doctor at Riley Children's hospital in Indy-whom we are very

happy with. My son's right hand has a partial thumb(its called a

nubbin) and banding around his index finger and 2 bands around his his

right wrist-he also his missing his right big toe and has abbreviated

toes all due to amniotic bands. The banding looked like residue from a

rubber band-it was a heavy indentation-the banding can also cause

amputation as well as syndactyty(spelling?) which means digits are

fused together. 's ABS is considered minimal compared to the

other extremes. After getting the clubfeet under control, we began

getting his bands released on his right hand. Our local ortho referred

us to one of his partners who was the " hand " specialist. When this

doctor saw david's hand-he said-I know what needs to be done-but has

never done it on a child-I am sending you to one of the best surgeons

who also happens to be in Indiana-we see Dr Mih for 's hand

anomalies-he is part of the Indiana Hand center and a marvelous

surgeon!!! WE love him-he is so kind, so patient, and did a great job

with the first operation. I can go on-and will if you wish!! Feel free

to email me at leenernd @ hotmail. com(minus the spaces). There is an

ononline support group for ABS-however, it also accepts-congenital

limb differences--which you may want to join-since I do not know the

exact hand anomaly--I can't give you definite answers-but I have and

know the resources that are out there!

Hang in there!!

kathleen

mom to bcf fab 12/7

>

> We keep getting more and more concerned with the upcoming birth of

our

> son. I posted back a few weeks ago when we found out he has bi

> lateral club feet. Now it seems that he also has a deformed hand.

I

> was wondering if any other parents have experienced this? I am 34

> weeks along and have been on bed rest for 3 weeks. The anticipation

> is overwhelming. If anyone can help please let me know! Thank you!

>

[Guest guest]

Hi!

When I first read your e-mail, I thought of arthrogryposis, as well. But like

the other poster said, there are sooooooooo many different types, that you will

go nuts trying to figure it out. TRUST me! My son was born with unilateral

clubfoot (only the right foot) and contractures in 3 fingers on each hand. His

hands are not " deformed " per se. These few fingers simply cannot fully

straighten--it's called camptodactyly. I went through every syndrome and

arthrogryposis definition on the internet. We took him to the best hand

specialist in New York City--Dr. Raskin. And he basically said to

continue with all the therapy and stretching and holding and playing and

massaging. One of the fingers is now " normal. " The pinkies are pretty much

normal. The ring fingers are the most stubborn. His function is good, so

that's what matters to us.

We know a family with a little boy who has arthrogryposis, and his clubfeet

are doing great--more stubborn than " regular " clubfeet, but doing well,

nonetheless--and his hands have improved incredible with the use of hand splints

and occupational therapy. To see this almost-1-year-old stick a bunch of french

fries in his mouth is truly beautiful.

Best of luck with the rest of your pregnancy. Keep posting and feel free to

ask whatever you want or to just vent whenever you need to!

(12/15/04, rt cf FAB 12-14 hrs.)

meglynn001 wrote:

We keep getting more and more concerned with the upcoming birth of our

son. I posted back a few weeks ago when we found out he has bi

lateral club feet. Now it seems that he also has a deformed hand. I

was wondering if any other parents have experienced this? I am 34

weeks along and have been on bed rest for 3 weeks. The anticipation

is overwhelming. If anyone can help please let me know! Thank you!