Newborn with Syndactyly (Webbed/fused Fingers & Toes)

This runs in my brother-in-law's family. I have one nephew who was born with two toes webbed, and a niece that had 6 toes on each foot with the smallest 3 all webbed. My bro-in-law had extra toes on each foot, and each of his siblings either had extra digits or webbing. I think one of his sisters had her ring finger and pinky webbed on each hand too.

Anyway, if you want any information about any of their experiences, let me know. They've got the scoop! Just email me and I'll send you on to either my sis or to her in-laws.

First off, congrats on the new baby, and what a stress and surprise. My 17 year old cousin has this. He had surgery when he was younger. I can't remember how old he was, maybe under 2? His arm with the webbed fingers is a little smaller than the other one, and does not move as fast, but he has complete movement of his fingers and in my opinion has adapted very well! I've never lived terribly close to them, but I'm close to his mom, and they've never mentioned it being a huge thing. He's a great kid, very popular with the girls in high school now, and plays a myriad of sports and is in the school plays as well. I had a friend in high school who had something similar as well, and was also missing a finger on that same hand- she chose to accentuate other things and all the guys loved her. I had a couple physical problems growing up and my own daughters both have "problems" but I've noticed that if you don't make a huge deal out of it, it doesnt become one. My almost three year old has an eye condition and she has adjusted so well, but I think part of that is because we've helped her whenever we can, but the biggest help has been us encouraging her to do her own thing and be independant. She's well adjusted, and uses just one eye, and can often see things we cant! Good luck with whatever happens.

Just a thought, if you do go through with any surgery, there is a book called Healing Trauma that would be great to take ideas from for helping your baby before and after. Massage would be a good tool too, if you can get a book on that as well, or here is a website or two. http://www.makewayforbaby.com/massages.htm
http://www.babymassage.net/why_benefits_faq.html

HI D.!
I have a daughter (now 3 years old) that was also born with syndactyly. She had an spare big toe on each foot as well as some webbing and she had her two middle fingers on each hand that didn't separate. I was devestate, shocked, depressed, confused, scared, etc, etc, etc. When she was 8 months old she had her first foot surgery to remove the extra toes. Amazingly, this was done with no over night hospital stay. I was very worried about that fact, but she did super. This surgery was in December so she came home with a glittery red cast and a glittery green cast for the holidays. The casts were full leg casts that were bent at the knees. They didn't slow her down one bit! She adjusted her crawl to a "commando" crawl and was still all over the place. Nine months later she had her 2nd foot surgery. This time they had to do some bone work on the foot bones that are right below where her big toes are. This involved some scrapping of the bone and repositioning of her big toes. Then they put a pin in each big toe to keep in in position. During this surgery they also corrected the other little bit of webbing of some of her other toes. That surgery was inpatient, and with the exception of finding out that she has a small allergic reaction to morphine (her face broke out in a rash), she did very well again. This time it was two glittery pink full leg casts. At that point she had started walking and I figured the casts would bring that to a halt...wrong. She would pull herself up and walk beside the furniture on the toes of her casts. At 21 months, it was the fingers turn for surgery. All the bones were there, but the skin didn't separate and the bones were slightly fused right at the base of her nail beds. I think that surgery lasted the longest-possibly 5-6 hours...and another inpatient stay. After the surgery, they wrapped the full arm casts (glittery pink with glittery green stripes) with diapers so she wouldn't hurt herself. She looked like a littler boxer! She was frustrated that she couldn't use her hands, but she quickly adjusted. She figured out how to play with toys, carry things around, and threaten her older brothers in no time!
The first and third surgeries did require skin grafts to be done and those were taken from her stomach, a little below her belly button-1 from each side. Now she's 3 and she will occassionally comment on her "owies". She said they were owies, but now we fixed them and they are all pretty. Her fingers look good and most people don't notice she has scars unless they look closely. Her big toes still kind of curve out a little bit, but as long as we buy wide shoes or crocs (they are almost exactly the same curve as her feet), she's good to go. She has recently developed some calluses on the bottom of her toes where some of the webbing was repaired. Her orthopedist said that may be a problem she just has to contend with. As long as we keep cream on them, they are ok, but if we go a few days without, they start cracking and sometimes bleeding. She has become very good at putting cream on before she puts her socks on in the morning and then we have a nightly ritual of cream and a quick little foot massage. When she was only a few months old and I was still trying to figure out how to handle her situation, I was sent to a geneticist. I was in tears by the time I left that office...I was told she was going to need surgeries, lots of physical therapy, she might have some mental disabilities, and on and on and on. I'm very proud to say other than the surgeries, they were wrong! Maybe it's because she's a girl, maybe it's because she's the 3rd child and she's trying to keep up with her brothers, but nothing is slowing her down. No P.T., no mental issues...other than she doesn't always think/sound like a 3 year old-she sometimes sounds like a teenager and makes me panic about what's shes going to put me through when she really is a teenager!
I'm sorry I've rambled on so long, but I know when I went through this I felt very alone and worried about what my daughter was going to go through. Now I look at it like this: she's just getting an early introduction and start on cosmetic surgeries-at least that's all it is-very cosmetic and very fixable.
Please contact me if you want to talk. I would love to have someone else to compare notes with and have my daughter be friends with that has been through the same thing!

I was born with a web between two toes on each foot as were two of my siblings. Our other brother was born with webbing between his thumb, pointer & ring finger on one hand. My mom always told us nothing could be done about our toes. But it never really bothered us. The most teasing we got was "does it make you a faster swimmer" & we would say yes. The only real nuisance has been not being able to wear the socks with individual toes. My brother had surgery on his hand before he was in kindergarten. They didn't do it when he was an infant because we were overseas. They had to graft skin from his thigh & had around 100 stitches but that was around 20 years ago. We all seemed to turn out okay though.

Hi,
I don't know much about syndactyly but I have learned some about it since I've had my son (4 months) who was born with Poland's Syndrome. Poland's is sometimes hard to diagnose but we were able to figure it out rather quickly because he is missing his right nipple and pec muscle. While he does not have syndactyly, most people with Poland's do. The msn group I belong to, Polands Syndrome Support, has a lot of information regarding hand surgery. I would suggest you go online there and ask about the surgery. It's a great resource.
http://groups.msn.com/PolandsSyndromesupportwelcome/_what...
Hope this helped!

J.

my friend, Nancy Fanning, has a beautiful baby girl that had that same thing. I'm sure she wouldn't mind if you call or email her. I would like to give you her information personally. please call me ###-###-####. R. Schreiner

I have a 27 year old friend who was born with this. I can see if she would be willing to email you some information. She had a few surgeries to correct this as a child and is completely normal w/ gorgeous fingers and toes. You would not know she had anything wrong as a baby. Hang in there.

When I was 12 I was diagnosed with scoliosis and I had surgery through the Shriners. Before we found them my parents were told that I would be in a full body cast for a year and probably wouldn't be able to walk again. The Shriners had me walking within 24 hours of my surgery. I am now 30 and fine. When my daughter was born she had torticollis and I took her to the Shriners and they fixed the problem. The primary care physician that I had said that this wasn't a big deal. It was a big deal to me though. Her face and ear was a little deformed and the Shriners also had me meet with a plastic surgeon just in case it didn't fix itself. We never had to go that far with it though. Now she is 8 and perfectly normal. I would recommend speaking with them. My dad became a Shriner after I had my surgery. They will help you with your appointments, help schedule your flights (if you have to fly to the hospital), schedule you to meet with other families who have the same issues going on so that you can ask questions and feel more comfortable with what is happening. To me they are wonderful. When I was 12 I met with a family who had already gone through everything that I was about to go through. Before I had my surgery they brought in a box that contained everything that they use in the operating room so that I could touch it and learn about it. Also, while at the hospital, some Shriners would dress up as clowns and bring goodie bags and I even had the opportunity to ride in a limo because one of them owned a limo company. If this is something that you would be interested in then let me know and I can help you out. Good luck to you!

S.