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. When we used our coybely pocket doppler we immediately knew something was amiss but we waited until he was born to find out. 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.