Our Down Syndrome baby that we never met

Today’s Boston Globe featured a story on how the detection of Down Syndrome early and other genetic abnormalities early on in pregnancy is resulting in ethical dilemmas for parents.    

In 2007, the same year the couple profiled in the story discovered their daughter, Julia, would be born with Down Syndrome, I was also pregnant with a baby with Down Syndrome.   We found this detail out after I miscarried at 10 weeks and I have not looked at a person with Down’s the same since.

At the time, we had a 3 year old and a 1 year old, but I had suffered 3 miscarriages (the first before our oldest daughter, the next two in between my daughter and son).  I knew how lucky I was to be pregnant again.   I started to show early on, my body knew what to do.   In the midst of this pregnancy, we were working on a fundraiser for a good friend who was in a terrible car accident.

At the fundraiser, we told my husband’s extended family and our good friends about the pregnancy, were so confident about the outcome.  I was so confident, the next Monday when I went to my OB for a routine exam, I didn’t bring my husband.   Despite the fact I threw up that morning from morning sickness, I wasn’t pregnant anymore.  There was no heartbeat. 

We had the fetus tested afterwards.  When we found out it was a baby with Down Syndrome, it made the loss more poignant.  It gave the baby more of an identity.  Later on, we found out it was a girl.  

At the time, we already loved that baby with Down Syndrome.  We talked about how we would have had the baby, how people with Down’s have such a happy outlook on life, how having a sibling with a condition like Down’s could make our other children better people.   Of course, it was easy to say after the fact.  

As I read the story today, I thought: it could have been us and at the same time it could have been us.  

When I went on to have subsequent pregnancies, 4 more times (only one at the end resulting in my son), we chose not to do prenatal testing in the early stages of pregnancy.  We crossed our fingers and prayed during the “big ultrasound” at around 18 weeks that the baby would be “normal.”   This seemed out of the ordinary and a bit crazy for most of our friends and even some of the doctors who eyed us warily.   

The to-test-or-not-to-test is another story altogether.  All I know is that when I look at a child with Down Syndrome, I think of that baby that we lost.  She would have been 6.

 

 

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2 Comments

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2 responses to “Our Down Syndrome baby that we never met

  1. Wow. Rebecca, thank you for sharing this story. xo

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