Monday, October 01, 2012

It's How You Use It That Matters

Breda posted this on Facebook this morning:

I'm trying to figure out the difference between this and mothers who elect to abort disabled babies but I just...can't.

The article she is referring to:

 Nazi extermination of thousands of disabled children featured in new Berlin museum exhibit

The exhibition, entitled “In memory of the children. Pediatricians and crimes against children in the Nazi period,” displays photos and documents related to various Nazi projects concerning the murder and torture of children, such as Action T4 and Lebensborn. 
While Action T4 focused on exterminating children who were physically or mentally handicapped, Lebensborn was a eugenic breeding program using unwed mothers, in which children with features not regarded as sufficiently “Aryan” were disposed of like so much waste. 
“Through 1945, over 10,000 [children] fell victim to the various programs which were designed to exterminate ‘life unworthy of living,’” the museum states. “More than 5,000 children and teenagers were tortured and murdered in the Nazi ‘children’s departments’ alone, institutions which were specially created for the purpose of extermination.”

I tend to agree with Breda on this matter. There is no gray area as far as we can see. The problem with "life unworthy of living" is that the determination of worth is in the eye of the beholder. The child in question may have an entirely different opinion of their own worth.

Our views concerning abortion (and eugenics for that matter) are well known so we won't get too deeply into those. The short version is we are very deeply pro-life for religious, moral, and ethical reasons. We are however also anti-legislation because the government can't possibly do anything but make the situation worse.

The bottom line is convenient pregnancy or no, we will do everything we can to preserve as much life as possible. That's a conversation we had long before we were married with the understanding that we would never terminate a pregnancy unless it was to prevent my death.

It's been 9 years since my last pregnancy. During that time prenatal testing has come a long, long way. 9 years ago genetic screening for chromosomal abnormalities and congenital heart defects was only used in high-risk pregnancies and the only widely-available tests (amniocentesis for example) carried a slight risk of miscarriage.

Now genetic screening at the basic level can be done with non-invasive tests and is far more widespread. Through advances in sonography and blood testing the risks of abnormalities for a specific pregnancy can be calculated with a true positive rate of 79-90% combined with a false positive rate of 4.7%. That's not perfect of course but if results are positive the more traditional more reliable invasive tests can be used.

Now genetic screening is offered in all pregnancies no matter the mother's age. Including ours.

This definitely leads to some moral quandaries. If testing is positive some choose to terminate the pregnancy and that's horrible. I know from personal experience that there are adoptive parents for children with all types of disabilities so the child not being wanted is not an issue.

Many parents, when offered the testing, become very offended. According to my doc many couples jump right to "I would never abort no matter what!" and decline testing. They don't even want to deal with the moral question.

Then there are those who, when offered screening, see it as an opportunity to be better prepared. Special-needs infants quite often need special handling at birth and sometimes require c-section in order to preserve their life. If the obstetrician knows ahead of time arrangements can be made and quite often the birth will happen at a hospital better prepared for the special circumstances.

We're big fans of being prepared and we want to preserve the life of our child if it is at all possible.

Our screening will be on Wednesday at the same hospital where Chris had his surgery. The testing, while widely available, takes specialists to both administer the test and read the results.

We'll be doing a nuchal translucency test and a first trimester blood panel. The nuchal translucency test measures a fluid cavity at the back of the neck. A larger than average cavity (and therefore more fluid) is an indicator of many chromosomal abnormalities (most notably Down Syndrome) and an indicator of congenital heart defects. The blood tests measures for blood markers that can also indicate abnormalities. By taking into account both tests 79-90% of chromosomal abnormalities can be detected by calculating probabilities based on the results. If a high probability is determined a follow-up test will be done using the more invasive technology.

No, our chances aren't particularly high (1 in 323 at my age) but when medical conditions are involved the probability you have what you have is always 100%.

If it turns out that we're having a special-needs baby we want to be prepared. We want to do everything we can to make the best possible life for that baby.

Genetic testing isn't inherently good or evil, moral of immoral. It's inherently amoral. Where one person would use the results as a reason to end a life, another would choose to take that knowledge and possibly save a life.

Genetic testing is like firearms. It's all in how you use the tools at your disposal.