What would you do if you were told that your unborn baby had Down syndrome?
Let’s face it: miscarriage is not a pretty topic. No one wants to talk about it as it is a touchy subject so many times it is simply swept under the rug. There’s a reason expectant parents are told to wait until three months before revealing that a baby is on the way.
I have a lot of personal experience in this area. Having suffered from recurrent miscarriages for years, I feel the pain of couples dealing with this. I have had a few chemical pregnancies around the 6 week mark, a ruined ovum was discovered on an 8 week ultrasound, as well as a very late miscarriage at 17.5 weeks which caused a great deal of pain and distress.
The way each person handles a miscarriage is unique and personal, no matter what stage of the pregnancy. My first miscarriage was in my second trimester and it was also my first pregnancy. I kept it a secret from my co-workers and most of my friends and family for the first few months. I was a naive optimist who thought that everything was going to work out. After all, I had the usual signs of fatigue and extreme morning sickness, which my doctor assured me was a good sign that the pregnancy was progressing well.
I had just turned 35 at the time. I was often mistaken as being younger than my age, so when I went to visit my doctor and his replacement, who didn’t know me, told me not to worry about the CVS tests because I wasn’t old enough, I reminded him I thought it was for women my age. I was told that I could have a first trimester screening test as a less invasive procedure to determine any fetal abnormalities. It was a new technique done through blood tests and ultrasound at around 11 to 13 weeks that was done in a private clinic and cost a few hundred dollars. I wasn’t sure it was the right choice for us as I didn’t feel my age either; I took care of myself and ate healthy, but thought I’d go just in case.
I had the procedure at the end of my 13th week. When they brought us in to discuss the test results, my heart sank. The genetic counselor told us that we had a 1:2 chance of having a baby with Down syndrome, or trisomy 21, as it’s also known. Since it was now too late for a CVS test, only an amniocentesis would reveal the real results, and we would have to wait a few weeks before we could do that.
Time was going too slow for the next few weeks. I went home and researched our test results online: what the PAPA-a results and HCG ratios meant. If our baby were normal, she would have a very stunted growth pattern as indicated by the PAPP-a ratios. The baby had a nasal bone and most trisomy 21 babies don’t, so I was convinced that everything would turn out normal. I searched the forums to find other women with results like mine. I couldn’t find anyone with odds as low as mine, but I did find another woman with odds of 1:3. We emailed each other and her amniocentesis revealed a chromosomally normal baby.
Finally, it was time for my amniocentesis. It hurt a lot to do the procedure, more than I expected, but by this time I was getting over my fear of needles. Because the odds of a trisomy 21 pregnancy were so high, they sent the results to the lab for what they called a FISH test. This is basically a quick test where we only had to wait about 2 days for the results instead of a couple of weeks.
The phone call from the genetic counselor came. She said the results were positive for Down syndrome as the FISH test revealed 3 copies of chromosome 21. I was in shock, I never thought I would have a disabled child. I assumed that she was pregnant with a boy, something that she also confirmed to be true. She explained that there were many options and that if we carried the baby to term, there would be almost a 50% chance that she would have heart problems. What would be the child’s quality of life? Would he be healthy or in and out of the hospital? There were so many questions that we had and this is a topic that I never thought we would have to consider. According to the data, sadly 90% of couples at that time chose to terminate the pregnancy through abortion once they discovered that their baby had trisomy 21.
During this time, we shared the news with some close friends. It was a difficult thing to keep to ourselves. They mostly said the same thing: that they really didn’t know what they would do if they were in our position. A couple told me they would have an abortion. We fought over how to manage our lives and had many discussions about the baby’s quality of life. My husband wanted to terminate the pregnancy and I was not sure. After all, I was a vegetarian who did not believe in ending the life of any person or animal. This was the ultimate curveball to reevaluate things.
We didn’t have to make a decision at the end because it was made for us. The doctor informed us that there was a “fetal death”. I suspected something was wrong because I had severe abdominal pain days before and I had a checkup. An autopsy report revealed that she had a hole in her heart, so she would never have survived until birth. Although I was sad about the termination of the pregnancy, I felt a great weight was lifted from me that I was not in a position to make a decision that would change my life no matter what: I either went against my husband’s wishes and raised a baby in need. or terminate the pregnancy like most people and live with tremendous guilt all your life.
This late miscarriage was the worst I have ever had. Perhaps having the worst possible miscarriage experience first made me better emotionally prepared to deal with half a dozen more to follow. Each was painful in its own way, but I would never wish my first miscarriage experience on anyone. It affected me in a way that would be hard for anyone who hasn’t been through to understand.
Like everyone who has a personal experience of having a miscarriage or a partner who has, it’s heartbreaking because you develop hopes and dreams of how your unborn child will turn out. I think it’s human nature to get attached no matter what stage of pregnancy you’re in, and people don’t know what to say when it happens most of the time. It makes others feel uncomfortable and they prefer not to bring it up at all, which can sometimes be worse than not acknowledging the baby in the way the parents would like. It’s a touchy subject, but I personally feel that after looking into it, the best response I got was a simple card and flowers to say I’m sorry, and it just stayed that way with nothing more to say.
All I can say now is that the tragedies I endured make me look back at the children I had years later with such gratitude and appreciation.
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