Sunday, July 11, 2010

at 7 weeks and 5 days

The twins are growing. I'll post my second ultrasound photo that shows that they are definitely two humanoid alien beings growing inside me. I go back when I'm 11 weeks and hopefully we'll be able to see the sex of the babies.

I had my second appointment where the doctor and I talked about the risk of Down Syndrome. I'm in a strange situation in that I want to know if I'm having a baby with Down Syndrome, but only because I want to be prepared. I will be over 35 when I deliver. (Hopefully. My little aliens better stay put till after my birthday!!!) I especially worry about the medical implications of any chromosomal condition. Heart and cardiac conditions are linked to Down Syndrome. Trisomy 18 scares me even more because children with Trisomy 18 typically don't survive very long. I can deal with long term disability, but not with death. I've never been good at that.

We decided to forgo the screening because I would not discontinue the pregnancy regardless of the outcome. And therein is the heartbreak in prenatal screening -- knowledge but no power. I remember being at the Canadian Angelman Syndrome Society conference in 2004 and hearing about a microarray -- a way to screen prenatally for Angelman as well as many other syndromes. I was horrified. In a society that devalues the lives of disabled people, where inclusion has made great inroads, but hasn't done enough yet, how could anyone make a fair decision regarding the life of a disabled fetus -- not yet a person, but already a diagnosis?

Then, in 2006, I heard some researchers talking about the possibility of giving pregnant women who were carrying children with AS massive dosages of supplements to methylate the father's silent 15th chromosome. It might allow for some mitigation of the symptoms of Angelman Syndrome.

THAT I could get behind. If prenatal testing let me know that my child was going to have Down Syndrome, and that I could take supplements to decrease the risk of heart involvement, line me up.

It's easy to have my mind on spina bifida, Down Syndrome, etc. etc. because those are some of the hard parts of parenting that will apparent from the start. School bullies and high school proms and drinking and all the others hazards of bringing humans into this world are safely in the future.

In speaking of developmental disabilities in a round about way...
I forgot to mention how helpful the OTIS people have been. I called and talked to an intern about all the medicine I'm on. A few days later, a counselor called me back and we talked for about an hour about each of my medications, the risks, the benefits, and what the studies say. We also talked about vaccines.

There are plenty of studies saying vaccines aren't statistically related to autism. There are plenty of people who swear those studies are lies. I think that statistically, probably, vaccines don't "cause" autism.

But the problem is, babies aren't statistics. At least two people I've met personally with autistic children said their children spiked terrible fevers after their vaccines and then never recovered, but instead started showing more and more signs of autism. These children both have classic Kanner autism, not Asperger's. (However, one child was three when I knew him. All reports now say he is extremely high functioning in academics and things like that, so he might be considered to have Asperger's now).

Then there is the troubling issue of the Hannah Poling case, where a family was given compensation for the underlying metabolic disorder that developed into autism, triggered by her vaccinations.

Then there is the person I worked with, my age, extremely developmentally impaired due to almost non-relenting seizures that started the night she got her vaccinations. I look at her and think "that could be me." Then there is a story told to me by a really trusted supervisor about a healthy baby boy who died the night after his vaccinations.

There are way too many fanatics out there who like to think that vaccines are a government plot to poison us. I don't think that's true. But I do think, like anything else, vaccines are a medical decision that comes with risks and benefits. I will vaccinate, but I will research the schedule and probably do an alternate schedule.

Being pregnant makes me walk the walk more than I expected. I say I love the kids I know with autism, with Angelman Syndrome, with Down Syndrome. Then I have to think about the possibility that my child may face some of these conditions. On one hand, it makes me think I'm a hypocrite because I want everything to be perfect for my babies -- I want them never to have to struggle, never to have to hurt. And disability is a very obvious struggle they must face. I've seen kids bite themselves in frustration, unable to speak, but needing badly to express. That breaks my heart. No one wants that for their child, any child. But on the other hand, I would feel strangely almost honored to have a child with a disability. I'm enough in this world to know how amazingly, heart-wrenchingly HARD it is, every day, and I'm almost afraid to type this, in fear that typing it makes it true. (Sort of like how I watched "Make Room for Multiples" every day the week before I discovered I was having twins.)

As I type this, I keep holding in my head the picture of a kid I had in my class this year. He has Down Syndrome. I love to brag on his academic skills -- his academic development is nothing short of amazing. There are areas he needs to catch up on, but man... he is a rock star. I gave him the same spelling words as all the other 5th graders and more often than not, he'd get an A. But that's not why I love him.
He was just an amazing soul, the kind of kid that makes everyone around him better. His typical classmates, his disabled classmates, teachers, parents... he just has a radiance.

(Not that we didn't have our moments, mind you...)

I've known maybe a dozen people with Down Syndrome in my life to the point that they would know me. There are other people I know with D.S. that I didn't get along with, that I found hard to be around, so I'm not generalizing and expecting every person with D.S. to have this child's gifts. But if my children are anything like this boy, D.S. or not, I would be so blessed.

1 comment:

Erin Sheldon said...

What a great, thoughtful discussion, Lesley. This is a hard topic. We chose not to have testing with Maggie's pregnancy because we thought "oh, kids with DS are sweet, we wouldn't abort." But if someone had described AS to us the way we heard about it with her diagnosis, we would've thought it was in Maggie's best interest to never be born. Your line about not yet a person, already a diagnosis is so powerful. By the time we had a diagnosis, we had a real life child with a meaningful life and a great personality. We didn't have testing at all with Ella's pregnancy even though the risks felt more real that time. I just wasn't willing to be in the position of having to make a decision about a child who has only a diagnosis, not yet a person. I'd rather go in blind then have to decide. Anyway, great discussion, your honesty is powerful reading.