This subject hits a lot of buttons for me right now, for obvious reasons.
In another thread a few months ago, I brought up the subject of terminating pregnancies for fetal defect. Mr. Ambrya and I are two weeks away from our big ultrasound, where not only will we (hopefully) find out the sex of the baby so we can stop referring to the baby as "it" but also look for anatomical indications of defects. They'll be able to check if the heart has all for chambers, or
only three, if the size of the cranium is indicative of trisomy-21 (Down's Syndome), trisomy-18
Edward's Syndrome, or Anecelphaly or Hydrocephaly (water on the brain) and check the spine for Spina Bifida.
I decided before we even conceived that I wanted us to have our threshold established in advance for when we would decide to interrupt the pregnancy, so that should we find out news of this devastating nature, we wouldn't be faced with having to make a choice while we're stunned, heartbroken and grieving. So there have been a few heavy conversations in our household over the past few months.
At the same time, however, we declined having the test known as the "quad screen" done (sometimes referred to as the triple-screen plus AFP) which is a blood test to determine the presence of certain hormones which MIGHT be indicative of defects. The reason we declined the test is because it doesn't actually tell you anything. Even if it's positive, it only tells you the fetus is *at risk* for certain defects, not that it actually has those defects. Typically, a positive result is followed up by an amniocentesis, which poses a risk of miscarriage, and I wasn't willing to run that risk on a mere "maybe." Furthermore, the rate of false positives (where the test is positive, but subsequent testing reveals no defects) is quite high, and I didn't want to put myself through that emotionally. We actually had an early miscarriage (5 weeks) this summer, not long before I conceived this baby, and so the first trimester of this pregnancy coming on the heels of that experience has been pretty fraught for me, with every little possible hint of irregularity escalating my stress level though the roof. I didn't feel the chances of actually finding out anything useful justified putting myself through that sort of emotional roller coaster.
So we decided to wait for the ultrasound/anatomy check. Unfortunately, since the quad screen is done a bit earlier than the ultrasound, it means the window for taking action if it turns out something is wrong is a bit shorter. But we'll still have some time.
Defects that are incompatible with life were pretty easy to decide upon, because the risk to my health completing the pregnancy and going through delivery would not be justified if there were no chance of the baby surviving. Defects such as Hypoplastic Left Heart Syndrome, where there is *a chance* of the baby surviving are a bit harder, and it was here we had to weigh some quality of life issues. With HLHS, in order to survive, the baby would have to endure three heart surgeries before the age of 2, and would need a heart transplant by the age of 15. He or she would experience severe pain with those surgeries, would never be able to dance or do gymnastics or play tag or do most other "normal" physical activity. And if a heart transplant couldn't be found, would die in the end despite all that suffering. So while there is technically "hope" it didn't seem to me that it was GOOD hope. It seems more like cruel hope, the kind that results in more suffering than can really be justified by the chances of a positive outcome. So we also decided we would interrupt the pregnancy in the event of a defect of that nature as well.
As far as something like Down's Syndrome goes, however, we wouldn't. When we decided to make a baby, we didn't put any qualifiers on it that it has to be a "perfect" baby. And frankly, I'm a bit concerned with the fact that we're trending toward "designer kids" where parents with enough money can not only decide the sex of the baby they want to have, but other genetic traits, before conception. We understand that depending on the severity of the Down's Syndrome (which there is no way of predicting) that it could be a very difficult, painful life for the child and a huge burden on us as parents, but ya know, when it comes to making babies, ya rolls the dice, ya takes your chances. There are plenty of Down's children out there who are high functioning and utterly delightful people, and in a situation like that, it doesn't seem to me that false, cruel hope outweighs merciful hope.
I'm all for the right to die. I'm extremely proud to live in the first state in the union to pass a Death With Dignity act (and we passed it TWICE, f'uck you, John Ashcroft!) and if the day ever comes when the only hope for me is cruel hope filled with suffering, I'll avail myself of that right.
But as for euthanizing children who are born mentally challenged? Disgusting and obscene. I really can't be more eloquent on the topic than that. Having made my/our choice that if fate sends us a mentally challenged child, we will embrace him or her, the idea that someone would treat such a child as garbage to be discarded at will is absolutely abhorrent to me. Admittedly, this is not a subject on which I am capable of NOT being emotionally invested at this time, but it's still repugnant.
Edited, Dec 13th 2006 1:01pm by Ambrya