Down Syndrome Awareness Q&A: Feelings of Quilt Over Your Childs Diagnosis

 Did you feel like it was your fault when you found out?


Endless questions fill your mind when you hear your child has Down syndrome. There are three types of Down Syndrome. Translocation (hereditary), mosaic, and T21. T21 is the most occurring and, at this time, has no medical explanation. It is randomly occurring. This made it a bit more hard for me to accept because I like to operate in black and white. T21 is in the gray. At first, I did blame myself, my body. I felt my body had failed her. I had lied to everyone that I was having a healthy baby, disappointed my husband and his family since Rory was the first girl in their family in 20+ years. 

These were — and are, at times still — emotions I have to work through. The responsibility of her life, regardless of her diagnosis, is heavy on me as it is with all my children. I grew them and birthed them. They are part of me. Their challenges are my challenges. As I’ve learned more about Down syndrome, though, I realize my body didn’t fail her. She and I were strong enough to bear the odds. 43% of babies with Down syndrome don’t make it, ending in miscarriage. Most babies with Down syndrome are born with heart defects, thyroid dysfunction, and a number of other challenges. 

Rory is healthy. She’s developing perfectly. This is a huge blessing. When I start to sink into feelings of self-blame, I look at how far we’ve come and try my best to imagine the possibility ahead of us. I see the joy she brings and I think to myself: What a rare gift I was blessed to bear. The experience of HER life, would have missed out on, if one of many tiny events had gone differently. It’s not that she’s unexplainable; it’s that she’s majestic and rare. She was meant for us.

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