Some – or many – of you may be wondering about Zoey’s left hand. I’ve mentioned it a few times in passing, but ulnar dysplasia is not a very common thing for people to hear about. In fact, only about 1 out of every 100,000 babies is born with ulnar dysplasia. There does seem to be a genetic component – meaning it can run in families, or happen in families with similar genetic conditions – but, as far as we know, there is no history of anything like that in our family.
When Zoey was born and they first told us about her hand, we were shocked but not overwhelmed. At the time, dealing with the c-section and the circumstances of her birth was a lot more stressful than worrying about two missing fingers. For those who don’t know of haven’t seen from the pictures here, Zoey’s left hand has a thumb and the first two fingers, which, at birth, were fully webbed together. In the first couple days after Zoey was born, her doctor was brainstorming, researching and consulting to try to determine why Zoey was missing those fingers. The first theory was that her hand had been caught by amniotic bands (some kind of loose strands inside the womb – I picture something like seaweed) which had tightened around the hand enough to prevent those fingers from growing. The thought was that this also explained why she never once turned and was always stuck in the breech position, despite three attempts at having her turned by doctors.
Very shortly after her birth, however, we all began to realize that the amniotic bands theory didn’t fit. It didn’t explain why the other two fingers were webbed together, and there were no bones or scars to suggest that the other two fingers had ever existed at all. Our doctor referred us to a pediatric orthopedic surgeon who specializes in limb deformities. Within minutes of looking at Zoey’s hand and x-rays, she told us it was a classic example of ulnar dysplasia. She was very confident in her diagnosis and, honestly, I had a lot of confidence in her. Ulnar dysplasia is more often called ulnar club hand or “ulnar deficiencies of the forearm.” Zoey has type 1, the mildest form. Her left arm is only very slightly shorter than the right, she was full range of motion of her elbow, wrist and thumb, and the fingers were webbed together by tissue only (no bone). We were told that ulnar dysplasia is much more rare than radial dysplasia, however, in my opinion, it seems to be better to have the ulnar variety. Zoey has to be monitored for a somewhat higher risk of things like hip dysplasia and scoliosis (other bone issues) but radial dysplasia is associated with problems with the heart, kidneys and airway.
The doctor also told us that babies with ulnar dysplasia are often referred to as “angel babies.” When I asked her why, she said, “Because they all tend to be stunningly gorgeous.” While I appreciate the compliment to my daughter (and quite agree!), I don’t actually like the term. My heart about stopped when she said it because, to me, angels imply death. A thought a brand new mother would really rather not connect with her baby.
Anyway. So now we had a diagnosis. For the next year we monitored Zoey’s hips with x-rays, ultrasounds and range of motion tests to make sure she wasn’t developing hip dysplasia as well. Depsite being at a much higher risk due not only to the ulnar dysplasia, but also being breech, Zoey’s hips always passed the test. To this day, however, she remains extremely flexible.
After Zoey’s first birthday, the time came to schedule her surgery to separate the two webbed fingers. Come on back tomorrow and I’ll tell you all about that experience.