Each time I became pregnant, my mother would get this look on her face. Then she would tell me straight up, “If your tests come back positive for Down syndrome, terminate the pregnancy.”

By Carrie U.

Terminating a pregnancy after a diagnosis of Down syndrome seems to come and go as a debate topic. At times this choice is unfairly characterized as “the wrong one.” As one who is in a position to know, I am here to offer my own perspective on this topic.

I am a 38-year-old mother of three beautiful children. I have been incredibly blessed; all were born healthy and, knock on wood, will continue to lead happy lives even when I am no longer around. With each pregnancy, I was very nervous. Yes, nervous about being pregnant in general, but also nervous because I have a sister five years younger than me and she has Down syndrome.

My sister is very mildly affected by her Down syndrome. She has a high school diploma and a full time job. She lives with my parents, and will continue to do so until they pass away. At that point, she will move into a group home situation and I will become her legal guardian. These are my parents wishes, as they do not wish for me to be burdened with taking care of my sister as well as taking care of my own children.

My sister is the most wonderful aunt I could wish for my children to have. She has this unconditional love that is most admirable. My children, who are 5, 4 and 9 months, love their aunt. She’s fun, she laughs, she makes them laugh. I love my sister very much. However, there will be a point, very soon, where my children will pass my sister intellectually. My sister’s intellectual capacity is at a six-year-old’s level. She is 32. My love for her will never change, but my children’s relationship to her might … I’m not looking forward to that day.

Each time I became pregnant, my mother would get this look on her face. Then she would tell me straight up, “If your tests come back positive for Down syndrome, terminate the pregnancy.”

That was a hard pill for me to swallow. Here was my mother telling me to terminate the pregnancy with someone who would be like her very own daughter.

Her daughter is precious to her, just as is any daughter is to their mother. However, most published articles about Down syndrome feature children with very mild cases. If each parent could be guaranteed a child who was only mildly affected by Down syndrome, I believe that the termination rate would decrease.

Unfortunately, chances are that most parents won’t get that mildly affected child who can graduate from high school or go to community college. There are many health issues that affect people with Down syndrome, along with the mental disability. Heart defects (thankfully, my sister was spared), early onset of Alzheimer’s disease as they age (we are waiting for that one), arthritis (we are going through that right now), poor hearing (she has that one), underactive thyroid resulting is obesity (my sister is very overweight). My sister has been assaulted as work several times because she doesn’t realize when someone is being mean to her. But, since she was being attacked by another disabled person, little is ever done about it.

This is all very stressful on my aging parents who get just two weeks off a year to be alone when my sister goes to a camp for people with disabilities. They won’t get to retire as they will always have to care for my sister. My parents don’t complain. This is the hand that was dealt to them, but my mom tells me on occasion that she wouldn’t wish this on anyone.

When a decision to terminate a Trisomy 21 pregnancy is made, it’s not made lightly. Many of these pregnancies were planned, and very much wanted. The decision to terminate is probably the hardest and most excruciating decision a couple will ever make. However, the other side of the coin is that these couples have two things on their side that my mother didn’t: technology or choice. They have the ability to make preparations for a lifetime with a child with Down Syndrome, or not to continue the pregnancy. Both choices are challenging.

I know the decision I would have made, but fortunately, I didn’t have to make it and for that reason, I am blessed.

Editor’s Note:

Carrie originally shared this story with us in October of 2005. We followed up with her in March of 2015 to see how things were going for her family. She said, “It’s only gotten more difficult as everyone ages. I wish they would find a group home for her so my mom and dad could finally get some peace in their lives.”