June 25, 1999
Sometimes its hard to talk about things that you really try not to think too much about, and this is one of those times when writing is much better than speaking. I don't talk about this often, except with my husband and my mother, and for over a year now I have really not dwelled too much on this issue. Wild Child has a very rare birth-defect.
Have any of you ever seen the movie ANGIE? Well its about a single mother who gives birth to a baby boy and he is born with a deformed arm, she makes a comment that it looks like a broken wing in the movie. My daughter doesn't have anything that severe but something along the same lines. She has polydactylly of the thumb, Wassal Type I, it's the rarest form. Her thumb is doubled(bones, cartilage, nail bed) on the right hand. Children are born with extra digits all the time and they are cut off after birth, but usually the extra digits are not attached to other digits and do not have cartilage.
When she was born and I was in recovery, in a drug induced stupor from the c-section, I noticed and told the nurse right away and they ignored me. I kept screaming that my baby had two thumbs, and they said yes dear, most children do. I couldn't communicate very well that she had two on the same hand and they were attached. The next morning the nursery was full of doctors looking at her and checking her out, I would later find out that I was not just hallucinating and that even though our baby appeared to be normal, she may not be.
I was scared, and afraid. Not so much about the appearance of her hand, because it wasn't really that noticeable unless you stared or were looking for it, and the function of her hand would be normal, and we were even told that her hand may have better function due to the large thumb base. What scared me was the 53 syndromes associated with that particular birth-defect, they ranged from mild to serious. The worst was malformed organs and mental impairments, the least was mild learning disabilities. I just wanted to leave the hospital with my baby, and I wanted to escape from what they told me.
After coming home from the hospital I was in a constant state of worry. I hardly slept, I watched her sleep, I carried her everywhere, I was paranoid. At each pediatrician visit we talked about her thumb. Our doctor assured us that Wild child was developing fine and that she was healthy and that we could wait to have any tests done(genetic, orthopedic) until she was six months old. In the mean time I hit the Internet and the local medical schools library, reading everything I possibly could about her birth-defect. I had read that this could be hereditary, so I began asking the oldest family members if they had ever seen this before. I was on a mission.
When Wild Child was four months old another baby was born with the same type of birth-defect, a boy to one of Jeff's cousins. This baby did not turn out as well as Wild Child. He had a hole in his heart, his kidneys were malformed and he had other disabilities, he went to UAB shortly after he was born and I never really heard anything more about what happen to him. I remember being so grateful that for now Wild Child appeared normal and that she was thriving. I wept for those parents and that other child, and felt guilty that I was glad it was not our child with all these problems.
When we finally took her to a specialist, I had educated myself and was feeling prepared for anything, anything but being told she was normal. That was exactly what they told us though, that she was perfect, and that as far as they could tell she did not have any of the 53 syndromes. We discussed correcting her thumb and making it into one, but were told they don't do that until they were at least two. We asked about if it would disable her in away and we were told no, but that it would be a cosmetic issue and when she got older she might be teased in school.
A lot of discussions have taken place since then. We made a decision not to correct her birth-defect unless she wanted to when she was older or if in some way down the road it caused her problems. Now she is two and has began complaining about her thumb. She holds it up and says it hurts. I have found her hitting it with a toy hammer, and biting it and I am really at a lost as to what to do. We have never treated her differently or pointed out the difference of that one hand from the other, but by now I am sure she can see that one hand appears different. (It's hard to explain but it looks like a crab claw) Jeff is wanting to take her back to the orthopedic surgeon and have him look at and possibly even go ahead and correct it.
I have very mixed feelings about this as you can imagine. I hate the thought of having her operated on, the thought of her tiny arm being in a cast up to her shoulder for 4 weeks and the cosmetic surgeries to make her hand look like the other one. I really don't want to do anything unless she really is in pain and there are problems. It is her hand, not mine and I if she wants to change it when she is older then we will do something about it. I have used the argument that maybe the gods gave her that hand for a reason, like a talent, and what if we destroyed that by fixing it. So far she is learning to write with no problems and uses both hands when coloring or drawing pictures, I feel that she is normal, she appears normal.
I am afraid of what is going to happen on the first day of school, will anyone notice, what will other children her age say? After she was born I was told an old wives tale that children born with a thumb/hand like hers were "witches" and were often left in the woods to die or they suffocated them because they believed they were the devil's children. This came from one of Jeff's grandmothers, who insists that we get her "fixed" before she realized what was "wrong" with her. Is there still this kind of ignorance in 1999?