What would you do if you were told that your unborn baby has Down syndrome?

Let’s face it: miscarriage is not a pleasant topic. Nobody wants to talk about it as it is a touchy subject so many times that it is simply overlooked. There’s a reason expectant parents are told to wait until the three-month mark before revealing that a baby is on the way.

I have a lot of personal experience in this area. Having suffered from recurring miscarriages for years, I feel the pain of couples who are faced with this. I had a few chemical pregnancies around the 6 week mark, a ruined egg discovered on an 8 week ultrasound, as well as a very late miscarriage at 17.5 weeks that caused a lot of pain and distress.

The way each person handles a miscarriage is unique and personal, no matter at 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 everything was going to be okay. After all, I had the usual symptoms of extreme morning sickness and fatigue, something my doctor assured me was a good sign that the pregnancy was progressing well.

At that time I had just turned 35 years old. I was often mistaken for being younger than my age, so when I went to visit my doctor and his replacement, who did not know me, he told me not to worry about CVS tests because I was not 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 performed by blood tests and ultrasounds at around 11 to 13 weeks, performed 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 would go just in case.

I had the procedure at the end of my thirteenth 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 is also known. Since it was now too late for a CVS test, only an amniocentesis would reveal the actual results, and we would have to wait a few weeks before we could.

Time was going too slow for the next few weeks. I went home and researched our test results online – what the PAPA-a results meant and the HCG ratios. If our baby were normal, he would have a very stunted growth pattern as indicated by the PAPP-a ratios. The baby had a nasal bone and most babies with trisomy 21 did not, so I was convinced that everything would be normal. I searched forums to find other women with results like mine. I couldn’t find anyone with as low a chance as me, but I did find another woman with a 1: 3 chance. We emailed each other and her amniocentesis revealed a chromosomally normal baby.

Finally, it was time for my amnio. It hurt a lot to finish the procedure, more than I expected, but at that point 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 results instead of a couple of weeks.

The phone call came from the genetic counselor. She said the results came back 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 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 you be healthy or in and out of the hospital? There were so many questions we had and this is an issue that I never thought we would have to consider. From 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 for us to maintain. Mainly they 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 struggled 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 wasn’t 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 re-evaluate things.

We didn’t have to make a decision in the end because it was made by us. The doctor informed us that there was “stillbirth”. I suspected something was wrong because I had severe abdominal pain days before and they checked me out. An autopsy report revealed that he had a hole in his heart, so he would never have survived to birth. Although I was sad about the end of the pregnancy, I felt that a great weight was lifted from me by not being able to make a decision that would change my life no matter what: either it went against my husband’s wishes and raised a baby with special needs, or terminate the pregnancy like most people and live with tremendous guilt for life.

This late miscarriage was the worst I’ve ever had. Perhaps having the worst possible miscarriage experience first prepared me better emotionally to deal with half a dozen more next. Each was painful in its own way, but I would never wish on anyone my first miscarriage experience. It affected me in a way that would be difficult for anyone who hasn’t been through.

Like all people who have a personal experience of having a miscarriage or a partner who has had a miscarriage, it is heartbreaking because it develops hopes and dreams of how their unborn child will turn out. I think it’s human nature to get attached no matter what stage of pregnancy you are in, and people don’t know what to say when it happens most of the time. It makes others uncomfortable and they prefer not to bring up the subject at all, which can sometimes be worse if they don’t recognize the baby in the way the parents would like. It’s a touchy subject, but I personally feel that after having scrutinized it, the best response I got was a simple card and flowers to say sorry, and I just left it at that with nothing more to say.

All I can say now is that the tragedies I endured make me look at my children I had years later with such gratitude and appreciation.