Let me say, I hate confrontation even sitting behind my computer screen. I don't do well in arguments. When someone has upset me, I'm the type of person that will pretend nothing is wrong until I just get over it. And if I feel like I've upset someone, I can't sleep for days. I've never been someone that engages in Internet battles with strangers and am usually the first to delete something I've posted that I'm worried might unsettle someone.
Well, there's a first for everything.
During my first two pregnancies, I immediately joined birth month groups on the What To Expect app. I loved logging in and seeing what fruit my baby was the size of that week. I enjoyed reading facts like her fingernails are growing or his hair is sprouting. I loved scrolling through discussions and "talking" with other moms due around the same time. So naturally when I found out I was pregnant with Wood Chip #3, I eagerly signed up for the February 2017 group.
For the past few weeks many posts have been dedicated to genetic testing. Usually moms are just eager to find out their baby's gender early, but yesterday someone typed something that unhinged me. To paraphrase, a woman responded to a post about genetic testing sharing that she terminated her last pregnancy because of a Trisomy 21 diagnosis and that her genetic counselor said that her baby would likely have a low quality of life and many health issues.
People, this is why there is a 92% worldwide abortion rate of babies with Down syndrome. Because there are genetic counselors out there giving outdated medical information and telling worried, vulnerable parents that people with Down syndrome have a low quality of life.
I responded to the original poster (not the woman who had the abortion) with Elliot's story and stated the facts about Down syndrome. I mentioned that I wanted to clear up some misinformation. Somehow this led to over the span of 24 hours me being attacked by a few women. I held my ground, but I won't get into specifics. Let me just say I have sat at my screen and literally cried my eyes out. And not because of anything that was said to me. But out of grief for all of those babies who will never have a voice. All of those babies who will never have the chance to prove people wrong. I cry because of all of those mothers who made a choice with false information in one hand and fear of the unknown in the other. All of those parents that will never experience the unexplainable, unmatched joy that a child with Down syndrome brings to a home.
I don't understand why genetic testing has been made into this sort of witch hunt for babies with special needs. I don't understand why so many in the medical community have seemed to adopt Hitler's views on children with disabilities. I don't understand how our culture has decided we get to choose which lives hold value and which ones don't. But what I do know is that no test or genetic counselor could have told me how loved and treasured Elliot would be. No test could have ever shown how full he would make my life or how happy we would make his.
One recurring argument in the internet exchange yesterday was that you never know what the range of abilities a child with Down syndrome would have. May I ask, how on earth is this an argument to terminate a pregnancy? All children have a range of capabilities! And what does that really mean? What if there was a test that showed your child will have some other learning disability? Or that your child will one day develop childhood cancer? Or that your child will grow up to be a convict? Or that your child will have blue eyes instead of brown? Would these be reasons to abort?
I feel all of this genetic testing though often well-intentioned (goodness, we just had it done so we could be prepared) has become a dangerous slope and is robbing the world of true diversity. There are entire countries, such as Denmark, boasting that they are close to eliminating Down syndrome. Let me be clear. You can never truly eliminate Down syndrome. It is a random, natural occurrence that happens in 1 out of 700 pregnancies, so the only way you can "eliminate" Down syndrome is by aborting every single unborn baby that prenatally tests positive for it.
I make no secret that when we found out Elliot had Down syndrome we were crushed. Down syndrome was not part of our plan. But we've learned so much since that day. We've learned that today thanks to early intervention and intentional parenting, people with Down syndrome go on to lead very full lives making friends and holding down jobs. We've learned that they can learn to live independently though most do remain at home contributing to daily chores. We've learned that most siblings take it as a privilege not a burden to care for their brother/sister once mom and dad are gone. We've learned that a whopping 99% of adults with Down syndrome are happy with their lives (I wonder what that statistic would be for typical adults). We've learned that while they do have many health concerns, modern medicine has lengthened their life span from 25 years old in just 1983 to 60 today.
But most of all, we've learned that people with Down syndrome are more like us than different.
I may be nonconfrontational, but I will not stand idly by while outdated information is being spread about Down syndrome. It will be my life's work if it has to be to show people the value in these children's lives. And as long as there are genetic counselors shoving doom and gloom down scared parents throats, I will continue to shout my son's worth.
http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/
