Let's Talk Genetics - This Life We Got

Let’s Talk Genetics

October 24, 2018 No Comments

Before I start this blog post, I want to make sure it doesn’t take too much of a political turn.

Let me start by saying that I believe every woman has a right to choose what is best for her and her family. I am grateful that I did not find out about Sienna’s diagnosis until she was born. I don’t know if I would have had the correct facts to make an informed decision. But before anyone can make such an important decision, they should have more than medical terminology thrown at them.

Approximately, 67% of babies in the United States who receive a prenatal Down syndrome diagnosis are terminated.

Here are some of the statistics of terminations in some other countries after a prenatal Down syndrome diagnosis:

100% in Iceland
98% in Denmark
90% in the United Kingdom
78% in France

Can you imagine having to defend your child’s value to the world around you? Sienna has something to contribute. These statistics are the exact reason this month exists. We want new moms facing this journey to know how much beauty and happiness people with Down syndrome contribute to society.

Watch as this amazing man with Down syndrome defends his right to live. It is powerful and extremely worthy of your time.

My favorite quote of Frank’s speech is, “Surely, happiness has some place in this world.”

This part of the Down syndrome journey is exhausting and it is one of the reasons I have chosen to share our lives so publicly. I have no doubt that I will be watching a video of Sienna like this someday, advocating on behalf of herself and her peers.

I hope and pray that when she is an adult that these statistics look better. Social media has provided us the opportunity to share the amazing contributions people with Down syndrome can make to society at large. Unfortunately, so much of the issue comes from lack of, or completely inaccurate, information about Down syndrome. Even medical professionals who deliver prenatal diagnoses may do so in a biased, cold, and unprofessional manner, and some even put pressure on families to abort.

I spoke with a mom recently who had a prenatal diagnosis and was asked four separate times by four separate medical professionals about termination. For the record, when the first professional asked her, she said she wasn’t interested, but still the pressure surrounded her. That’s just one mom’s story. I have heard many more like it in my birth group.

If you or anyone you know ever gets a prenatal diagnosis or a birth diagnosis and needs to talk, please call me. No judgment from me. I’ll just lend you an ear and give you a clear picture of what life is really like when you have a child with Down syndrome. It’s far from what I imagined. It’s so much better.

I’d hate for the world to miss out on Sienna and her peers with Down syndrome. She enriches our life and the lives of the community around her.

I’ve decided that it’s pretty darn cool to have a kid with Down syndrome. Who wants a lifetime of nothing special? Not me.

Parenthood is hard. Just because a kid is born healthy does not mean that kid will stay healthy and be perfect. I am stealing a line from another mom I heard this week. When you become a mom, you worry about everything. My worry has a name. That’s truly the only difference.

We are so busy running from pain that we forget the beauty that comes out of hardship. Hardship builds character and strength. In those proverbial storms of our lives, if we trade our fears for comfort, we lose out on the character, the strength, and the beauty that emerges when a storm is weathered.