Tomorrow morning, we are heading to Boston Children's Hospital for McKenna's hand surgery, which will be Monday, Columbus Day, October 10th. We have to get there a day early for her pre-op tests. Also, we are discontinuing her Lovenox injections after tomorrow morning's dose (hopefully forever, yahooooooo!!!), so she has to go on a Heparin drip tomorrow evening before the surgery.
When McKenna was born, no one noticed or mentioned that two of her fingers were joined together. After she was with us for about a half an hour, I noticed. I'm amazed that I stayed calm, but I did. I saw that they were joined and said to Brett, "Hey honey, two of her fingers are stuck together!" We told the nurses and the Dr., and they didn't really react much (which seemed kind of odd at the time, but I'm sure they were hoping we weren't going to completely freak out).
They told us it was the most common hand birth defect. It happens to 1 in 2500 babies. (Not that common, really.) And its often a genetic or familial trait. (We don't have anyone in either of our families who have had it). Its more common in boys. (She's obviously a girl). And its most often the space between the middle and ring finger that is involved. (For her, its the middle and pointer finger on her left hand). So, no one can tell us why this happened to her, it just did.
It happens between the sixth and eighth week of gestation. That's right, SIXTH AND EIGHTH WEEK. When babies are growing, they initially have all fingers connected. And then an enzyme is released that separates the skin. And this happens before the eighth week of pregnancy. Its amazing to me that this happens so early in the process. So, for whatever reason, for McKenna, the enzyme didn't quite do its job, and her middle and pointer finger did not separate.
We went in for x-rays and initial consultation when she was about a month old. Thankfully, the x-rays showed that her bones are not connected, just the skin, so it is considered simple complete syndactyly (simple because it is just skin, complete because it is connected all the way to her fingertip). The x-rays also showed, however, that one of the bones in her pointer finger is significantly smaller than it is supposed to be, which causes her finger to be shorter than it should be and causes it to bend toward her thumb. Since the pointer is connected to her middle finger, that finger is also growing bent. And, her entire left hand is smaller than her right hand, which no one can explain either. Its kind of interesting and puzzling, really. So, given her bone abnormality, we were referred to Boston Children's, and are so thankful to have a fantastic pediatric plastic hand surgeon (that's all he does!!) who is going to be doing her surgery on Monday. Dr. Taghinia doesn't think the bone abnormality is even related to the syndactyly; its a separate issue. How our sweet girl ended up with TWO hand issues, we will never know..... Its something that most people don't even notice (her nurses and doctors didn't even notice when she was born), but we want her to be able to have full use of her fingers and hand as she gets older. So, its important to do.
This surgery was scheduled for April, when she would have been eight months old. Dr. Taghinia wanted to do it then so that as she learned to use her hands, her fingers would already be separated. But then our girl got sick in February with Kawasaki Disease, (also rare, but that's a story for another blog entry) and we had to postpone the surgery indefinitely. She has now been given clearance for the surgery by her cardiologist, now that her aneurysms have healed quite a bit and are so much smaller than they initially were.
The surgery itself is quite a bit more complicated than it originally would have been, due to her anti-coagulation meds, but we are so blessed to have her cardiologist and hand surgeon both at the same phenomenal hospital. We are thankful to have an amazing team working with us, and we are praying for all details to be attended to for both her hand and her heart throughout this process.
So tomorrow we head out. We are, of course, nervous about the surgery itself, and also about the recovery process. But we are optimistic and know that she is in great hands. Boston's and God's. Couldn't ask for anything more.