The message you never want to get from your midwife is the one where she says “I received the results of your second trimester screen. Please give me a call back as soon as possible.”
When I was 17 weeks pregnant with Anna I got that very message. I was sitting in bumper-to-bumper traffic on the 105 freeway, checking my voice mail on my way home from work. I looked out of my window at a sea of unknown faces in the cars around me, surrounded by people, yet utterly alone.
When I was finally able to speak with my midwife she explained that the blood work that I had submitted the week previous, a routine second trimester screening for chromosomal abnormalities and birth defects had returned a much higher than normal risk for Down Syndrome. Specifically, my baby’s risk of Down Syndrome had been calculated to be 1 in 81, as compared to the risk based on my age of 1 in 769. It’s easy to complain about the nausea, the unflattering maternity clothes, the fatigue of pregnancy. But all those complaints pale in compassion to the fear that your child might not be healthy.
When I was pregnant with Theodore we received a slightly anomalous result on a first trimester screening test. It was unclear whether the anomaly was statistically significant and after speaking with a genetic counselor, who believed that our baby had no increased risk of problems, we declined to pursue further testing. But that potential anomaly opened up a can of worms that has wriggled about Jeff and I ever since. The anxiety over that one slightly anomalous test colored the rest of my pregnancy with Theodore and was a major factor in the horrible prenatal and postpartum depression I experienced.
The first and second trimester screening programs are subsidized by the state of California. My midwife explained that, as such, the state would pay for me to undergo further testing, a high level ultrasound and an amniocentesis, given my baby’s highly elevated risk of Down Syndrome. I made the soonest available appointment with the recommended perinatologist, an agonizing wait of one week after my midwife’s initial call. That week found me sobbing every night into my midnight snack as Jeff and had painful, gut-wrenching discussions about what was an acceptable amount of risk to the baby and under which circumstances we might terminate a pregnancy. You see, ultrasound is 100% safe for the baby yet does not provide a definitive answer. The best we could hope for with an ultrasound was that approximately 70% of babies with Down Syndrome show muscular-skeletal, gastrointestinal, and/or cardiovascular anomalies during the scan. Amniocentesis, on the other hand, is nearly 100% definitive, but carries a risk of miscarriage somewhere under half of a percent, depending on the skill of the physician performing the procedure as well as other factors. Jeff and I asked the same questions over and over: What was the actual risk of amniocentesis for our baby? What would it really be like to raise a child with Down Syndrome? What effect would a sibling with Down Syndrome have on Thomas and Theodore? Our midwife, our obstetrician, even the internet couldn’t give us the answers. And, of course, as we had these literal life or death discussions I felt our baby moving innocently, within me. Initially we found ourselves agreeing that we didn’t think we could parent a child with Down Syndrome. Prior to actually being confronted with this situation I had thought that I would opt for the amniocentesis and that if the diagnosis was indeed Down Syndrome, that we would end the pregnancy. But over the week Jeff and I found our thoughts evolving together. I focused on two questions: Was there any risk level for amniocentesis that would ever be acceptable to me? I could only imagine the absolute horror of our baby losing their life as the result of a procedure that I chose to have. And would our child and our family suffer if our son or daughter had Down Syndrome. Without a doubt Down Syndrome would be a huge challenge; it would alter the course of all of our lives. But, in the end, Jeff and I came to the conclusion that we wouldn’t suffer and that our child wouldn’t either. The truth is that parenting is a crapshoot; I felt that when we chose to have children we chose to take on whatever those children might be and the joy and pain of being their parents. I would never let a child of mine or our family knowingly suffer, but for us Down Syndrome didn’t meet that definition. And if ever there was a time that I was thankful to have married someone that shares the same values as I did, it was in facing a negative prenatal diagnosis. Jeff and I were completely in agreement. We would take the ultrasound and leave the amniocentesis. We would hope for the best and prepare for the worst.
On the appointed day we drove to our appointment with the perinatolgist. When we arrived I realized that it was 2:00 in the afternoon and I hadn’t eaten anything all day. The hunger combined with my nominal pregnancy nausea along with the mounting anxiety made me feel quite physically ill. I kept thinking that I would take the pain of labor any day over the feeling in that waiting room. After a session with a genetic counselor we were finally granted the ultrasound. Our baby appeared on a huge LCD display across the room. He or she wriggled and kicked; looking for all the world like a perfectly healthy baby. Being my third child and somewhere around my 30th ultrasound I knew what I would see on the screen but I found my breath catch at how only 18 weeks into pregnancy the baby on the screen looked like the tiny person that he or she already was. Although it was clear that at level of detail we would easily be able to determine the baby’s gender we opted not to find out at that moment. I wanted the reveal of whether or not we were having a son or a daughter to be a purely happy moment. When the ultrasound came to the part of the anatomy that would give things away I closed my eyes and the ultrasound technician wrote down our baby’s gender on a card and placed it in a sealed envelope. After a long 45 minute scan by a technician, the perinatolgist came in and performed a second scan. Both scans showed a perfectly healthy baby. The perinatolgist told us that given the ultrasound our baby’s risk of Down Syndrome was now improved from the 1 in 81 although he couldn’t say by how much.
We drove home quietly, knowing that we would somehow have to sit with the unknown for the next 22 weeks, but sure that our decision, not to know, had been the only one we could live with. And then we decided to go out to dinner and open the envelope. Over a plate of focaccia I opened the card and read “Girl!” and in that moment my anxiety melted away and I was simply giddy with excitement.
Almost no one knew of our concerns. As sure as I was that our decision was the right one for us, I could not stand to hear any questions. I could not stomach the thought of the inevitable comments along the line of “My sister’s roomate’s cousin has Down Syndrome and he/she is the happiest person in the world or made his/her family’s life hell.” I could not bear the thought that this dearly loved little girl could actually have Down Syndrome.
There have been a number of pieces of recent legislation in several states that would limit the rights of women to know about potentially negative prenatal diagnoses or to act upon that information. Such laws will not save babies and families they will potentially destroy them. Knowing about problems before the baby is born can save the life of the baby. Knowing about problems can save a family as well. Not everyone feels the same way about what constitutes suffering and everyone’s family is different in their ability to handle a child with significant challenges. We did not know definitively if our daughter had Down Syndrome or not; but we choose that ignorance with the knowledge that we would accept and still be able to lead a happy life even in the face of such adversity. These laws have been framed as being part of a “war on women”. They are not simply anti-woman, but anti-father, anti-child, and anti-family.
When imagining our daughter’s birth I had thought that the first thing I would do after she was born would be to look her over in great detail searching for signs that anything might be amiss. Instead I found myself flooded with relief that she had simply been born. I was overcome with love for our daughter and just like her brothers before her I simply nursed her and held her close, never waiting to let her go. Nearly five months after her birth it is clear that Anna does not have Down Syndrome. I am incredibly grateful that Anna is perfectly healthy. And I am incredibly grateful that I had the right to choose to know what I needed to about her health before she was born and the right to act (or not act) on that information.