I distinctly remember, sometime around seven weeks pregnant, my husband asked me, “but what would happen if the baby had a problem?” He’d had a bad feeling about the pregnancy from the beginning. Even from when we started trying to conceive, he worried that this time we would not be so lucky. He asked, “Why should we take a chance on our luck running out? We have two healthy, fabulous boys.” I convinced him that we are healthy, our kids are healthy, and while I was 38 at the time, I wasn’t that old and things would be fine. I promised him there was nothing to worry about. My answer to his question about what would we do if there was some problem was, “We would love him just the same.”
I never thought I would choose to terminate a pregnancy. I was always pro-choice, because I don’t believe anyone else is in the position to understand the circumstances in a woman’s life in order to decide what she should do about a pregnancy but herself. I just never thought I would be in a position to make such a choice.
Before my first child, I had had three pregnancy losses – two early miscarriages and an ectopic pregnancy. When we finally got a viable pregnancy in 2007, we figured we would take whatever we were given, even if that meant a special needs child. We declined all testing, except for the 20 week ultrasound. Since we were seeing a reproductive specialist, we did have early ultrasounds up until 11 weeks or so, when they did mention his nuchal fold measurement was just fine. Maybe we were less worried than if we had heard different news, but I had only heard stories of unnecessarily despair from false positives on first trimester screenings. I figured my chance of a false positive was higher than my chance that something was wrong with the pregnancy, so why should I bother. Similarly, we declined all testing with my second son – that strategy seemed to have worked the first time after all, and fortunately, all was well at the 20 week ultrasound. In hindsight, I would have been shocked had I been told at 20 weeks that my baby had spinal bifida, or multiple birth defects to the heart, brain, kidneys, etc., that were incompatible with life. I can’t imagine I would have wanted to carry to term a baby that would have been sentenced to death from the moment he was born. Fortunately, all was well with my second son as well, and we now have two beautiful boys who love (and fight with) each other dearly.
We had always talked about the possibility of having three children, and despite my husband’s initial reluctance, we decided to try again naturally. Once again, we had an early miscarriage. We sought out the help of a reproductive specialist who gave me progesterone supplements for the next pregnancy. We were thrilled to see the heartbeat, and shared the news with family around eight weeks. The specialist followed my progesterone levels, and when they dropped below a certain threshold, he gave me additional progesterone.
Since my husband had been worried about health issues, I suggested we do the cell-free DNA testing that had come out only within the previous year. Using maternal blood only, it was non-invasive and posed no threat to the baby. While he was anxious about the results, I was wondering whether we should find out the sex of the baby from the test or wait until the birth.
At fifteen weeks pregnant, my bags were packed for my 5-night business trip to London. I had just stepped out of the shower, barely covered with a towel, when I got the call: “Unfortunately I have some bad news for you. Your baby has trisomy 21.” I remembered the meeting with the genetic counselor when she mentioned the three major trisomies that were tested and what they all meant. For a split second, I couldn’t figure out which one Trisomy 21 was. Was that the one where they die right after they are born? Or that other one I think is also fatal? No, it was Down syndrome. I was in a state of shock as I discussed when to do an amniocentesis for confirmation with the genetic counselor. My husband walked up the stairs as I blankly spoke into the phone. He took one look at my face, and said, “The baby?” I nodded. “Downs?” I nodded again. He raised his arms high and then fell to the floor. Tears started streaming down my face. There must have been a mistake. This could not be happening to us.
I hung up and my husband cried to me, “But you promised everything was going to be okay! You promised! Do you know how many resources that requires? Resources we don’t have?” I had no words. We walked downstairs in tears and told my mom, who happened to be in town to help out while I was on my trip. I had told the genetic counselor that I could not do an amnio to confirm until I returned from my business trip. And yet my world had just come crashing down on me. How would I be able to function, in a state of confusion and uncertainty, on a business trip half-way around the world? My mom had the voice of reason: I had to cancel the trip.
I spent the next 24 hours or so in a state of shock. I still couldn’t believe it was happening. I Googled cases of false positives on this test, and found a few cases. I talked to my genetic counselor and asked what the likelihood was of a true positive. I clung to the 20-30% chance she gave me that there might have been an error. I also asked her the sex: another boy. The day after we got the news, I thought to myself, I better come to terms with the possibility that this test might actually be right.
I Googled stories of children with Down syndrome. I found pages of families with children living with Down syndrome. Strangely, most of them were infants or young children. I wondered about older children, teenagers, and young adults. I discovered that there is a very wide range of possibilities when it comes to trisomy 21. Some children will be relatively high-functioning, others less so. Many would need heart surgery within the first year. Many also needed gastro-intestinal surgery. The cognitive capacity of the child would likely get stuck somewhere between infancy and childhood. Adults with trisomy 21 needed constant caregiver support and could not live independently. If they lived into adulthood, they would be more likely to have early onset Alzheimer’s.
Yet this was a baby inside of me. This was my baby. I could feel him kicking and moving. He could join our family and I would love him unconditionally. How could I choose not to have him? Maybe he would be a lucky one and be only mildly affected by T21.
I then found myself Googling termination for medical reasons. I found the Babycenter support group and read through scores of stories of women who had ended their much wanted pregnancies, tears streaming down my face. A day later we got results from the amniocentesis – it was either true trisomy 21, or it was mosaic Down syndrome (when some, but not all, cells have the trisomy of the 21st chromosome). I started to Google mosaic Down syndrome. At first it seemed like these children were less affected, but I quickly realized that the range is about the same as those with full Down syndrome. Once again, there was no way to predict where your child would end up on that spectrum.
My midwife gave me the phone number of a woman who had chosen to carry to term and had a child with Down syndrome. I didn’t call. Her experience wouldn’t be able to tell me where my child would end up on that spectrum either. I had to be prepared for the worst-case scenario – a severely affected child who would live into adulthood. Otherwise, how could I possibly carry to term?
I thought about our two boys. If I had this baby, I would likely spend a lot of time in the hospital away from them. I would sacrifice everything for this baby, including time with my two boys, my career, and, quite possibly, my marriage. Knowingly bringing a special needs child into this world would rob my two boys of a huge part of their childhood that I had wanted for them. It would take away my time. It would take away their college money. It would saddle my boys with responsibility for caring for their brother after we were gone.
With my two boys at the forefront of my decision, I decided to terminate the pregnancy. I was 17 weeks at the time of the procedure. The anesthesiologist put me to sleep with tears streaming down my face, yet full of life inside of me, and then I woke up in what passed to me as an instant, completely empty and lifeless, the tears spilling even more strongly. Going through that procedure was the hardest thing I have ever done. The months after the procedure were dark and grey. I felt very sad about the decision we had made. I spent some time second-guessing the decision, how our life might have been different, how things could have been. But, I treasured greatly the time I had with my two boys, and they carried me through this time.
Eventually, the fog began to clear and I began to be thankful that I was able to make the choice that I did. I was so grateful not to have to spend so much time, energy, worry and tears on a child with an uncertain future. Every time my older child, age five, had a tantrum, I imagined that same tantrum happening in a boy who was five years old on a cognitive level but 20 years old on a physical level – large, heavy, and full of testosterone. I imagined the heartache we were avoiding.
I don’t expect everyone to agree with the choice we made, but I do believe that even the most staunchly pro-life advocates can at least understand the uncontrollable urge to protect the children you have and provide the best possible future for them. For us, that meant not accepting a possible future with multiple hospital visits, expensive medical bills, constant preoccupation for a sibling, casting our boys into the shadows, using their financial resources to care for their sibling, and expecting them to continue the care after we were gone. I am thankful that we live in a country where we could make the choice that was best for our family.