Friday, June 19, 2015

Prenatal Testing

It has been quite a while since my last post. Life continues to be all kinds of crazy and days have a way of giving way to the next. Soon we find ourselves with a school year finished and running to catch up with all the things we had planned for summer. Hopefully, I will fill the blog soon with some of the wonderfully fun things we've already done, but for now, I want to address something that is heavy on my heart: prenatal testing.

If my Facebook newsfeed is anything to go by, this is a bit of hot topic right now. From what I understand there is a new test referred to as the NIPT (Noninvasive Prenatal Test) that is done after 10 weeks. A blood sample is taken from the mother. From that sample doctors can separate the mother's DNA from the child's. Once the child's DNA is identified, they can check for genetic "abnormalities", the most common being Down syndrome. Some in the medical community are lauding this advance in technology. After all, in the past, if a parent wanted a definitive prenatal diagnosis of Down syndrome, they would have to do amniocentesis, which ran the risk of harming the baby. Personally, I have no issue with this new test. What I do have a questions about is what happens after the test results are presented to parents.

For too long I believe that many, including some in the medical profession, have had a skewed view of what living life with Down syndrome means - for both the parent and the child. Too many, out of ignorance, paint a dreary picture of hardships and struggles. Far too often abortion is suggested as a better option, as if to say, "To save everyone some pain and hardship, just clear the slate and try again. It will be better for everyone." Now, I ask you parents out there, how many of you have gotten through even the first year with your "typical" child and not experienced hardships and struggles? I would wager that the number is pretty low - because parenting is hard, no matter what kind of child you have. I once told a friend that I had an advantage, I found out right at the beginning of my child's life that I don't have control over her future. It usually takes most parents about 18 to 20 years to come to that realization.

One of the leading arguments in support of aborting children with Down syndrome (thank you Richard Dawkins) is that people with Down syndrome don't "contribute" to society. What does that even mean? I don't ask that flippantly, but I truly would like to know what he means by that. Does he mean that they won't make a huge salary? Does he mean they won't pay taxes? Does he mean that they won't make the world a better place? If these are his arguments, I could easily find examples to refute them. How can we possibly tell a person's potential by simply looking at their DNA? How can you speculate on someone's ability to make a difference, or "contribute", to our society and culture by only looking at their genetic coding? The answer is: You can't.

I think that it simply boils down to fear. We seem to fear what is different, to not trust it, to call it things like "abnormal" and "disabled". The message is clear: It is wrong to be different. The truth is we are heading down a very slippery slope. What will happen when a genetic marker is found for autism? for cancer? for schizophrenia? for addiction? Will parents be handed information on abortion and told that their lives would be too hard - to clean the slate and start over?

So that brings me back to my original question when it comes to this kind of testing. What happens when the results are presented to parents? Are they simply told about their option to abort? Are they presented with words like "abnormality" and "disability"? Or, are they also given information about what life is like with a child with Down syndrome? Are they invited to meet a family and gain an experienced parent's perspective? Are they able to spend time with a person with Down syndrome? Are they told of the many resources available to them? Are they told that their child will be more like them than not?

My prayer is that they are given both sides of the story, because from my perspective, Abby's story is one of a million out there contributing to making this world a much better place.

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