Sawyer’s Leg and Hand
January 31, 2012 § 6 Comments
While Brian and I were at our 25 week ultrasound for Sawyer, to see if everything was growing right and to get all of his measurements, the ultra sound tech couldn’t seem to get a good picture of his right leg. The tech assured us it was fine, he saw his leg, but Sawyer moved so much he couldn’t get a good picture.
A few weeks later I was sent to another gynecologist so they could get a picture of his leg. Brian wasn’t able to get the rest of the day off so I drove the 45 minutes to Fresno. While in getting the ultrasound I was chatting with the tech and trying not to laugh because the ultra sound wand was tickling my stomach, when all of a sudden she got really quiet and left to get the doctor. My heart dropped. When the doctor came in, she took a look and then said “There’s something wrong with his left hand, with his right leg and it looks like he doesn’t have a left ear.” She said all this while looking at her paper work and then she left. The ultrasound tech led me to another room where I was told to wait for their genetic specialist. As I sat there trying to get a hold of Brian all I could think was that it was my fault. I had done something wrong, I didn’t take the right vitamins, my stomach was too small and he didn’t have enough room to grow…
I had been sitting there for about 10 minutes when I decided to call my mom. It took me about 5 minutes before I could take a deep breath and calm down enough for her to understand me. When the genetic specialist came in he moved me to yet another room, handed me a box of tissues and started talking to me about how they would have to amputate his leg, use plastic surgery to give him an ear and fix his hand. Luckily my mom was on speaker phone writing all of this down, because I didn’t hear a word of it.
When I got home, I told Brian, we talked about it and decided we needed a second opinion. I immediately got on the phone with Tricare. They made me another appointment… 2 weeks later.
When the day of the appointment finally came, we again made the 45 minute drive to Fresno, to yet another gynecologist. The first doctor had been right about two things. There was something wrong with his right leg, we could see that very clearly and there was something wrong with his left hand, but they couldn’t really tell exactly what, because he kept hiding it from us, but he did (and still does!) have two perfect ears.
Jumping ahead to when Brian separated from the Navy and we moved back up to Auburn. Luckily I was able to join my parents insurance with Kaiser, and that’s when things got better. They needed another set of ultrasound pictures for their records. After many inconclusive results from Fresno, Kaiser figured out that he has Fibular Hemimelia, which basically means he is missing the fibula in his right leg. His tibia is also bowed and he only has three toes. He has 3 fingers on his left hand, his pinky, ring finger and middle finger. His ring finger and middle finger are fused together: Syndactyly.
We then talked to their Genetic Specialists and they told us that he has a 99% chance that he will develop normally, that this isn’t genetic and it’s just something that happens. I finally felt for the first time that this wasn’t my fault and of course, we knew we would love him no matter what.
After he was born, it was much less scary. His abnormalities looked way better than we had imagined. Of course everything looks scarier in your mind, a short leg with a weird monster foot and a crab hand. Once we actually saw it in person, his foot looks pretty much the same as his left and his leg is only a little bit shorter and his hand is actually kind of cute… when it’s not poking you in the eye or when he’s not gagging himself with it.
We have gone to Shriners in Sacramento. We love them! Since he doesn’t have the fibula in his right leg, the stabilizer bone, they will be taking the front part of his foot off, leaving his heel and then breaking and straightening his tibia. He will have a cast on for 6 weeks; after he gets the cast taken off they will fit him for a prosthetic foot. Then he will finally be able to run around and of course wear shoes!
We go back to Shriners on February 2nd to find out if they will be able to separate the fingers on his hand.
As of right now, Sawyer is hilarious. He just learned how to crawl after army crawling for about a month. He pulls himself up on anything he can. He has one tooth. He screams and says Dadadada.. He’s just now starting to say Mamama and Bababa. Speaking of bababa he still refuses to drink out of one, so we’ve skipped that and moved onto the sippy cup. He’s finally starting to come around to pureed foods. He drools so much I have to change his bib 8 times a day and we are wondering if he ever actually swallows.. Right now he laughs hysterically every time someone says “open”, and we all love him to pieces.
Thank you for reading and I will keep you updated about his hand!