Liam’s Macrodactyly
So I mentioned the appointment with Liam’s surgeon the other day, but it occurs to me that I’ve never really talked about Liam’s hand on this blog before. And I know that when we got Liam’s diagnosis, I would have LOVED to find a blog or something about macrodactyly. There just really isn’t that much information online about it. And so, I thought I should probably explain a little. Liam was born with a congenital hand defect called macrodactyly (“big fingers”). On his left hand, the thumb, index and middle fingers are all affected. His index and middle fingers are also joined together which is called syndactyly.
When we saw a surgeon back in April, he said that he would separate Liam’s joined fingers, remove as much bulk as possible in the large digits and then he would drill the growth plates in the affected fingers to keep them from getting any longer. The biggest problem with the large fingers though is not the length. Soft tissue builds up around the fingers making them really fat and that’s what makes them less functional. Liam has trouble grabbing things with his big hand because there is just too much bulk. When we saw the same surgeon the other day, he is now saying that he thinks we need to begin by amputating Liam’s index finger (it’s the biggest and bulkiest of the large fingers).
While looking for information online about macrodactyly, this children’s hospital in Boston had the most information. According to the description of their program, macrodactyly is something they see every day. So I’ve decided to get their opinion on Liam’s condition as well. If the experts on this condition say that Liam’s index finger has to go, then at least I’ll know I did everything I could. I filled out an online form to request an appointment the other day. I got an email back from them requesting pictures of Liam’s hand and some medical information. The hand specialist there is going to review Liam’s case and then do a phone consult before we come out since we are coming from so far away. I took some pictures of the hand today and I thought I would put them on the website for people to see. Some of you have probably never seen Liam’s hand. Some of you may have wanted to get a closer look, but didn’t want to offend, etc. Or maybe someone has just found out that their baby also has this condition and is searching the entire internet for information like I did so many months ago. In any case, here are the pictures. Feel free to ask questions if you have any.
Posted by Shauna | Filed under: Liam, Pictures, macrodactyly on November 4th, 2009 at 12:38 am
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I’m sure this will help tons of people. I still get a lot of people coming to my blog because of my post about Fifth Disease that Corina had.
I love that you contacted the hospital in Boston. You’re such a good mommy.
I’m glad you posted pictures of his hand , but couldn’t you have also posted one of the face of one of the cutest boys to ever be born. No prejudice here BTW I do want to help with the trip and if there is a Holiday Inn close by I’ve got points for a free night Love ya Dad
Hi: I’m 59 and have been active in music and sports all my life. I had two fingers affected at birth: the index and middle; left hand. At 6 months old the middle finger was amputated to allow for more dexterity. Of course in 1950, surgery was not nearly as advanced as today. Long story: I’ve been a drummer all my life. I have played on many albums and toured around the world. I am now blessed to have a career in commercial real estate, a wonderful family, and a 7 year old daughter. Though this anomaly may seem tragic, it is not. You learn to conceal and deal. I am just now considering surgery not for cosmetics but to relieve some pain. I have experienced numbness for many years and have been having increasing pain I believe from possible nerve damage to the large finger. Oddly enough I think it is beacuase I am still playing drums a bit too hard! Anyway, be grateful that God has blessed you with a unique son who will find a path that works for him.
Thanks for telling about your sons macrodactyly. My daughter also has macrodactyly, but only the middle finger is affected, and not very much.
I is always good to have two doctors opinion, in all cases. Wish you good luck with treatment!