When genetic testing revealed that my son would have Down syndrome, my feelings ran the gamut—I felt fear, shock and devastation. But worst of all was the shame. I thought something might be intrinsically and terribly wrong with me.
It was as difficult a time as I’ve ever had. I spent the next months preparing to bring home a child that might have all the horrible problems that the doctors warned me of: heart issues, intellectual and speech delays, digestion problems, a shorter lifespan and numerous behavior challenges. Was this my fault, I wondered?
Last month I attended my first support group for parents of children with Down syndrome. In the seven years since my son’s birth, I never considered getting the support of other parents until I ran into some behavioral issues I knew others had encountered. The meeting was emotionally difficult as I listened to a mom with a child the same age as my son share through her tears how guilty she felt that she’d had a child late in life and had thereby caused him to have Down syndrome. She felt her child having Down syndrome was her fault.
Here are a few facts about Down syndrome that might help anyone who is pregnant or over 35 years of age and considering having a child:
1. Down syndrome is not a genetic hereditary disorder that can be traced through family history. It is a random occurrence that happens in the early stages of conception. It is not scientifically known what causes Down syndrome.
2. People who have Down syndrome have a full, or partial extra copy of chromosome 21. While people without Down have 46 chromosomes, those with Down have 47 chromosomes.
If Down syndrome was anyone’s fault at all, knowing the answer wasn’t going to help me be the best parent I could be.
3. It has been thought that rates of Down syndrome increase when the mother is over 35 years old. However, 80 percent of Down pregnancies occur in women under 35.
4. Ninety percent of pregnancies where babies are diagnosed with Down syndrome in utero are terminated.
5. Some children with Down syndrome will have certain physical and intellectual developmental issues, but not all. It is a case-by-case experience.
Whose fault Down syndrome is seems to be a question every parent who faces this life-changing experience might ask. And the answer for all of them is that it’s no one’s fault. Unlike many ailments (if you think of it as such) and many types of birth defects, Down syndrome is not a genetic disorder than can be traced to one’s family medical history. Down syndrome has not been linked to behavioral habits or environmental conditions in or out of the womb.
I will admit I played the blame tape in my head for a couple weeks during my pregnancy, but once I decided I was moving forward with my pregnancy, I let it go entirely. If Down syndrome was anyone’s fault at all, knowing the answer wasn’t going to help me be the best parent I could be.
The night at the support group meeting, I wanted to assure a mother that she was not to blame for her baby's Down syndrome. I wanted to take away her grief, but I knew that was impossible, and I believe she needed the chance to express herself. All parents who find themselves adjusting to having a child with Down syndrome deserve a safe space to let go of their feelings. I’m just happy to know that the occurrence of Down is a random, unexplainable event. That’s one fewer thing I have to fix.