CoolestFamilyEver » macrodactyly

Waiting

Jesse — Wed, 28 Apr 2010 15:33:15 +0000

We’ve been sitting in the waiting area for almost three hours now. Liam’s been going through his surgery and we’ve been doing anything we can to distract ourselves. It’s the longest wait imaginable. I don’t know how the parents here for heart or brain surgery are doing it.

We did Liam’s pre-op appointments yesterday. It took around 4 hours for all of them and he was a trooper. We even got him to nap through all of the x-rays. Afterwards, we took him to the aquarium to look at fish. He was too tired to get very excited, but he sure did a lot of looking around. And he wasn’t cool with the manta ray getting that close to him, glass tank or not.

He slept long and deep last night, exhausted from the long day. He woke up in a good mood this morning, blissfully unaware of what his day held.

Two hours or so of surgery to go. It feels like forever.

Beantown or bust

Shauna — Wed, 11 Nov 2009 06:27:45 +0000

Well, folks, it looks like we’re going to be going to Boston after all. I got a call from the hand surgeon at Children’s Hospital Boston yesterday. It was so nice to talk to someone who seems to know what they’re talking about and yet, doesn’t act like they know everything. Basically, he told me that NO ONE has seen enough of these cases to be able to say they know what the right answer is. The reality is there are several different approaches that can be taken and he said that my opinion as the mother will determine to a large extent what approach he’ll end up taking. We seemed to be right on the same page in terms of what we’d like to see happen in the first surgery (separate the index and middle finger, drill the growth plates to stop the large fingers from getting any longer, and then debulk as much as we can). After that, he said he’d like to focus his attentions on making Liam’s thumb more functional before we even talk about the index finger. I like this plan because it means that we can make a decision about amputation AFTER we know what the nerve structure and so forth looks like inside of Liam’s hand. It just seems ridiculous to decide to amputate without knowing for certain what we are dealing with. This surgeon confirmed my feelings even more by telling me that apparently there are two types of macrodactyly. In both cases, fatty tissue builds up causing decreased function in the affected digits. BUT, sometimes nerves are affected (and therefore enlarged) and sometimes they are NOT. I didn’t know that, but now that I do, I can’t believe that anyone would recommend amputation before knowing what type we’re dealing with. If the nerves aren’t enlarged, de-bulking the fatty tissue will be much less complicated, so that’s what I’m hoping for.

At this point, I need to gather up Liam’s x-rays and other medical information to send out to him. After he’s had a chance to review Liam’s case thoroughly, we’ll decide about a meeting. I’m not even sure at this point if we’d just schedule the surgery, or if we’d have to go out there for a consult in person. I’ll keep you updated.

Liam’s Macrodactyly

Shauna — Wed, 04 Nov 2009 06:38:10 +0000

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.