Picture of a child with Arthrogryposis

Picture of a child with Arthrogryposis

October 24, 2007, 6:06 am
Filed under: Disability, Peanut, Photos, Pistachio

I am so tired of reading about parents who were told by their doctors to terminate pregnancies of kids with arthrogryposis without any explanation of the degrees of severity of the condition, or the fact that measurements can be off on ultrasounds. Yes, you can have a child with such severe AMC that they cannot survive – it isn’t uncommon. But you can also have a kid that not only survives, but thrives. For instance, my kid is already the object of a crush. She has a little boy in preschool who absolutely must give her hugs before she leaves school every day. And it isn’t the “naughty” boy, either. Which is probably why she doesn’t seem to care all that much.

Anyway, the post title is from the Google searches I get on a regular basis. I will not ever deny that having a child with physical disabilities is difficult, even with a child like mine whose challenges are in the “moderate” range. But it is no less rewarding that parenting any other child, and, I think, often more so. Will she suffer because her legs don’t work right? Of course. She already has. Is it unbearable suffering? I’m pretty confident saying so far, no. In fact, she’s a ridiculously cheerful kid the vast majority of the time. And there are benefits too. For instance, I won a contest for the grossest baby story. Even without looking at the names, I’m pretty sure you could guess which story was mine.

I didn’t always know this. I can’t blame any parent for being terrified, and thinking they can’t do it. But the doctors should know better. They know their measurements aren’t always perfect. And if they can’t imagine that parenting a child with a disability can be okay, they have no business advising anyone to terminate a pregnancy when the parents have no idea what it means to be that parent and no other guidance whatsoever on the subject. Frankly, I think Dream Mom’s blog ought to be required reading in medical school for anyone who will deal with disabled children or their parents. While I am quite sure she wishes her child did not have the diagnosis he does, I am also quite sure she never wishes she didn’t have him. And she writes more eloquently of her love for her son than anyone I have ever read.

When we went back to the perinatal center for Pistachio’s ultrasounds, I took Peanut as often as I could. I wanted all those techs, doctors, and genetic counselors to see her. This is what it looks like. You terrified us for no reason, gave us PTSD to the point that I am willing to have an unmedicated vaginal birth rather than go through another c-section and my husband is looking into getting a prescription for tranquilizers and anti-nausea meds just to be present at this birth, because your measurements were off. The only possible way you can make up for it is to not do it to anyone else. You can find materials to hand out that focus as much on the two-thirds of children with the diagnosis of arthrogryposis that do well, instead of only the one-third who don’t, for instance. You can discuss the fact that sometimes you have been wrong. That isn’t giving false hope. It is presenting a full picture to people who have just had their lives turned upside down. Can you imagine what it would be like to have terminated a pregnancy for AMC and then, later on, find my blog or amcsupport.org, unless you knew that the information you were given about your child’s future quality-of-life was correct?

I know this seems to have come out of nowhere, but it was actually triggered by a news story that showed up in my blog feed search about a little girl in kindergarten with AMC that just started walking after a new surgery for her scoliosis. No one had thought she’d ever be able to walk at all, but she now walks better than Peanut. Her parents had been recommended termination. Go watch the video in that link and tell me how the doctors who did that can live with themselves.

I do want to make something clear – this isn’t about being pro-choice to me. I am adamantly pro-choice, probably more so than before I had Peanut. If we had been given the information we were given at 20 weeks instead of 36 weeks pregnant, and had we known that information to be accurate, we would have terminated the pregnancy without regret. My problem is the lack of understanding, both of the limitations of the science and of the realities of parenting a child with a disability. Termination should not be “recommended”. It needs to be presented as an option when appropriate, along with as much information about support systems in place for parents and children when that isn’t the only choice. I can tell you from experience that isn’t necessarily what happens, even for parents like us where termination wasn’t an option.

I need to stop here, because I have not had enough sleep and I am contracting again. I get to do a 24 hour urine test today. Yesterday I started swelling up again and while my blood pressure wasn’t any higher, apparently some other test wasn’t so good (like, I put on two pounds overnight and 4 pounds in the previous four days?) and I got a phone message that I needed to do this today. They don’t even want me to get up enough to drive over and pick up the jug. So maybe you’ll all get lucky and I’ll have a little time to post a belly shot or two, now that I have replaced my broken camera. And if something happens, someone will post here, so if I don’t post later it isn’t necessarily because anything happened other than I took a nap.

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