What Would You Do If You Were Told Your Unborn Baby Had Down Syndrome?By Isla L Brookview
Let's face it - miscarriage is not a pleasant topic. Nobody wants to talk about it since it is a touchy subject so many times it is just brushed under the rug. There is a reason that expectant parents are told to wait until the three month mark before they disclose that a baby is on the way.
I have a great deal of personal experience in this area. Having suffered from recurrent miscarriages for years, I feel the pain of couples that deal with this. I have had a few chemical pregnancies around the 6 week mark, blighted ovum discovered on a 8 week ultrasound, as well as a very late miscarriage at 17.5 weeks that caused a great deal of pain and heartache.
I had just turned 35 at the time. I was often mistaken for being younger than my age so when I went for a visit to my doctor and her replacement - who didn't know me - told me not to worry about CVS testing because I was not old enough, I reminded him that I thought it was for women my age. I was told that I could get first trimester screening done as a less invasive procedure to determine any fetal abnormalities. It was a new technique done by blood tests and ultrasounds around the 11 to 13 week mark that was done at a private clinic and would cost a few hundred dollars. I wasn't sure that it was the right choice for us since 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 13th week. When we were brought in to discuss the test results, my heart sunk. The genetic counselor told us 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 real results, and we would have to wait a few weeks before that could be done.
Time was going too slow for the next weeks following. I went home and researched online our test results - what the PAPA-a results and HCG ratios meant. If our baby was normal, it 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 do not, so I convinced myself that everything would turn out normal. I looked through forums to find other women with results like mine. I couldn't find anyone given as poor odds 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 get the procedure done, 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 great, 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 weeks.
The phone call from the genetic counsellor came. She said that the results came back positive for Down Syndrome since the FISH test revealed 3 copies of chromosome 21. I was in shock, never thinking that I would have a disabled child. I guessed that I was carrying a boy - something she also confirmed to be true. She explained that there were many options and that if we were to carry the baby to term, there would be almost a 50% chance that he 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 we had and this is a topic I never thought we would have to consider. From the data, sadly 90% of couples at the time chose to terminate the pregnancy through abortion once they discovered their baby had Trisomy 21.
During this time, we shared the news with some close friends. It was a hard thing to keep to ourselves. They mainly 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 abort. We struggled with how to handle our lives and had many discussions about the quality of the baby's life. My husband wanted to terminate the pregnancy and I wasn't sure. After all, I was a vegetarian that didn't believe in ending any person or animal's life. This was the ultimate curve ball to make to re-evaluate things.
We didn't have to make a decision in the end because it was made for us. We were advised by the doctor that there was "fetal demise". I suspected that there was something wrong because I had severe abdominal pains days prior and got checked out. An autopsy report revealed that he had a hole in his heart so never would have survived until birth. Although I was sad about the pregnancy ending, in felt a huge weight lifted as not to be put in a position to make a decision that would change my life no matter what - either I go against my husband's wishes and raise a special needs baby, or terminate the pregnancy like most people and live with tremendous guilt for a lifetime.
This late miscarriage was the worst one of all of them I have had. Perhaps having the worst experience possible miscarriage-wise first better prepared me emotionally for dealing 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 it to understand.
Like everyone who has personal experience having had a miscarriage or a partner who has, it is heartbreaking because you develop hopes and dreams of how your unborn child will turn out. I think it is human nature to get attached no matter what stage of pregnancy you are at, and people do not know the right thing to say when it happens a lot of the time. It makes others uncomfortable and they would rather just not bring up the topic at all - which can sometimes be worse to not acknowledge the baby in a way the parents would like. It is a touchy subject, but I personally feel having gone through it, the best response I got was a simple card and flowers to say I'm sorry, and it was just left at that with nothing else needing to be said.
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.
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