I spent almost four hours this morning writing the story of my pregnancy and Peanut's birth for my essay assignment instead of sleeping. It is something like seven pages long, so I'm not sure if I will be posting the whole thing here, or some abbreviated version.
I have told this story in bits and pieces online, over the phone, and in a brief synopsis to people who say "what's wrong with her?" For the record, never use those words when asking about a child's differences. "What happened?" is, I think, acceptable, because something did happen, but absolutely nothing is wrong with her. I don't mind being asked, I do mind the implication that she is somehow defective.
My daughter has been diagnosed with Arthrogryposis Multiplex Congenita. I am leaving the letters the way they should be because I want people to find this place if they are looking for it, because there aren't a lot of active sites out there about it. The name means multiple joint contractures from birth. Peanut was in a frank breech position throughout my entire pregnancy, meaning her feet were up around her ears. Her knees were locked in a hyperextended position, her right foot was clubbed, and her right hip was dislocated. None of the joints from the waist down, except her toes, have the range of motion they are supposed to have. Her thumbs and one index finger are also affected, and she can't really use them. She can't pull her arms straight above her head, or bend backwards very far. Her arms are very small and a little short compared to most babies. She also has an eye condition that sometimes goes along with this, where her left eye doesn't move in all directions, giving her a cross-eyed look sometimes. She was put in hip-to-toe casts at the age of six weeks, and wore them for the next three months. She now wears removable splints that she will have for the next several years. Her legs are skinny and obviously look "different", with odd dimples at the knees, and her right one is shorter than her left because of her hip dislocation. Her feet look different too: one is long and slender, the other is short, wide and curved. Her legs now don't quite straighten, but don't bend more than about 30 degrees unless we bend them for her, and then only to 90 degrees. She cannot put her feet in her mouth like most babies, and is just now, at seven months, able to bear any weight on her legs. She needs at least two surgeries on her legs and hip, and possibly one on her hand, within the next year. Her surgeon promised us that by the age of two, she'll walk and run like any other child that age, but she'll never have a normal range of motion.***
She is alive, however, her brain MRI was just fine, and she's the prettiest little girl in the world, to boot. You can see the pictures, and you can't deny it, can you?
The link in the title above contains information about Arthrogryposis, as well as information about a baby girl with Arthrogryposis abandoned in a hospital in Ecuador after her birth and who is now up for adoption. I know some people who read this blog are interested in adoption. Please take a look. If I could take her, I would in a heartbeat.
**UPDATED: Well, the surgeon was a little off. During her surgery to lengthen her quadriceps muscles, he discovered she had a lot less muscle tissue than it appeared from the outside. At well past two years-old, she is able to stand in full-leg braces, and take some steps behind a walker, but she's a long way from walking and running like any other kid, if she ever will. We'll keep working with her, and keep our fingers crossed.
Thursday, September 16, 2004
Posted by Carrie at 12:42 PM