Hi! My fraternal triplet (we have 2 identical one fraternal) has split hand/split foot syndrome. He was born with a "split" in the middle of his hands and feet and is missing some fingers and toes. On each side of each split, he does have some fingers/toes. We are working with PT and OT and at this age (will be 2 in Sept) he is doing fine and does everything as well as his brothers. However, OT, PT, Ped all recommend surgery, which would allow him to have more of pinchers (his thumb and index are webbed on one hand and partially webbed on the other). I am a worried mom. This isn't a medically necessary surgery. He is coping just fine (this would likely just make things easier for him as he learns to write, button things... ) He was 2.9 when he was born, had chronic lung disease, a stubborn PDA that took a long time to close, and spent two months in the NICU. He is healthy now- but I hate to put him under for something not necessary, with the fear that something could go wrong.

Also, I am wondering if anyone knows of any child with this syndrome (we don't know of any- even PT/OT do not.- I would like to talk to another parent and would be interested to know how kids did both with/without surgery.

Thanks!

Amy
Mom to:
G 00
B 01
BBB 02

Amy, I do not have any children with this problem but a friend i met in college had this. Her mother had surgery at age 7 to remove the webbing. She said that she was the one that asked her parents if she could have it done. She had no real complications from the surgery that she could remember but she said it did make her life a lot easier as far as writing(lots of writing in college). I wish I had kept up with her as I would put you in touch but sadly after college my life changed drastically and I never kept up with anyone.

I would like to let you know that children are very resilant to surgeries, but your fears as a mother are very real.

I will say a prayer for you that whatever dicision you make will be the right one for you and your child.

Good Luck. Krista

Mom to^Eugene^-8-16-81-2-7-86
Tina 11-7-83
Sarah 2-26-91
Grandma to James- 2-28-2003
Aunt GGG triplets 10-02-02

Mom to^Eugene^-8-16-81-2-7-87
Tina 11-7-83
Sarah 2-26-91
Grandma to James- 2-28-2003
Aunt GGG triplets 10-02-02

Krista:
Thanks for your rely and prayers. The thought had crossed my mind too- to just wait and let it be his decision. Everyone comments on how well he has adapted (OTsPTs included) but they also say that it would be so much easier for him to adapt to having the surgery at this young age. Anyway... I have been praying as well and am hoping God will, in time, provide a clear answer as to what would be best for Caleb! Thanks again.

Amy
Mom to:
G 00
B 01
BBB 02

Amy, my eldest son had the opposite problem -- he was born with an extra thumb on his left hand.

We were determined not to remove it -- and subject him to full anesthesia -- for cosmetic reasons. At age two, they determined that his thumb was not enervated (no nerves) so, even though it had a joint and nail, he couldn't move it. It wasn't in his way and he was developing normally, so we did absolutely nothing.

However, when he went to preschool, he began to ask if it could be removed. We made sure that he asked several times, before we discussed it seriously. He was only three, but very verbal and intelligent. We explained that once it was removed, it couldn't be sewn back on. At age 4, he made a very determined decision to have it removed.

The surgery was very quick and he recovered completely. (I was a complete basket case all day.) Now (age 16), he says that he regrets having it removed, because it was "cool," but I'm not so sure about that.

Just one more thought: My parents and in-laws pressured us to no end and were very angry that we didn't remove his thumb immediately, because it would make our son "different." But, our son is very different -- he's extremely gifted, very political, and quite a classic nerd. The thumb was the least of it. Everyone is different.

I'm sure that Caleb will do well either way. (Gorgeous name, btw!)

Best of luck,
~~ Jen

Auntie Jen
Mom to 3 teens <sigh>
Aunt to bbg triplets 10/30/03

Hi Jen:
Thanks for your reply. I do feel a little "pressured" in knowing that everyone else wants him to have this surgery. Some are worried about how "cruel" other children can be. I realize this may be true. However, Caleb will never look normal, even with the surgery, and though this may be hard for him at times, we can already see he has a fighting personality, and feel he (and all of our children actually) will learn positively from this. I agree with you that everyone is diff. in their own ways too. I think that kids being kids, will always be able to find something to "pick on" other kids about!

Anyhow, I am glad to hear from another mom who felt some pressure but waited until it was something her child voiced he wanted. (I won't make a decision based on the pressure from others- and am researching things on my own- but it does, at times make me doubt whether or not I am doing the right thing, even by waiting this long. He is doing awesome now, and WHAT IF, having them separated, does not work as they plan, and the fingers they separate actually get in the way of each other). And of course the anesthesia, my biggest worry. I guess that is why I am researching and trying to figure out what the best thig is.

Thanks again!

Amy
Mom to:
G 00
B 01
BBB 02

Amy, I've found that kids can be as kind as they can be cruel (like adults, right?). Mostly, they are curious.

Teach Caleb to explain that he was born that way. He can tell friends that he can move this, but not that, how it feels, let friends touch and hug if they'd like. The more open, candid, and comfortable he is, the more comfortable the kids will be.

My middle son has lots of disabilities (hearing aids, back brace...). Two weeks ago, he gave a 30-minute presentation to his 9th grade health class on chronic depression with lots of personal stories. The kids were amazed that he wasn't ashamed. Devin didn't think that there was anything to be ashamed of. :c)

Take your time on this. So many medical decisions need to be made immediately that it's nice to have one with no deadline.

All the best,
~~ Jen

Auntie Jen
Mom to 3 teens <sigh>
Aunt to bbg triplets 10/30/03