Real, not hypothetical

Jan 21, 2016 | D&E, Stories, Trisomy 21 (Down syndrome)

My daughter is everything to me, and having a sibling with potentially severe disabilities would change the rest of her life. The caregiver burden could fall to her, and that didn’t seem fair, either.

by R.S.

I was living abroad with my spouse and our 2-year-old daughter when I found out I was pregnant. It was an enormous but welcome surprise. I have polycystic ovarian syndrome and it had taken over two years of fertility treatments and two rounds of IVF to conceive our daughter. I didn’t think I could get pregnant spontaneously, and had planned on doing IVF once we moved back to the US a couple of years later.

I wanted to be happy, to celebrate the pregnancy, but it just seemed too good to be true. So at first I anticipated miscarriage. Every time I used the bathroom I expected to see blood on the toilet paper. When I went for an ultrasound, I braced myself for no heartbeat, but there it was, robust and steady. I watched our embryo grow from ultrasound to ultrasound. I experienced pretty significant morning sickness, which I hadn’t had with my first pregnancy. “It’s a good sign,” people would tell me. I had started to tell our closest friends and family, but I was still guarded. I kept a list of people who knew so I would remember whom to tell when I miscarried.

I didn’t miscarry. At 10 weeks I returned home to the US for an extended visit to both work and to see family. I immediately met with my new OB, who reassessed me to be already at 11 weeks gestation. I quickly asked for prenatal testing via the newer, more accurate cell-free fetal DNA technology (commonly known as Harmony, Materniti21, Panorama, etc.). I was frustrated that my regular OB couldn’t do this and that they had to refer me to a Maternal Fetal Medicine specialist for this test, which delayed my testing for almost three more weeks because there were no openings.

In retrospect, of course, I wish I had immediately started searching for another clinic or place that could do the test immediately. But at the time, I didn’t really expect any genetic abnormalities. Although I was 35, what obstetrics begins to consider “advanced maternal age,” my chances of having a fetus with Trisomy 21 were only 0.5%. The odds were even smaller for the other trisomies. I reassured myself with those statistics and busied myself with my new job and with catching up with my extended family. My body continued to change and I was starting to need maternity pants.

I got the call on a perfect, bright sunny summer afternoon. I am a physician and unfortunately have had to deliver bad medical news to patients. I knew instantly from the tone of the genetic counselor’s voice that something was wrong. The genetic counselor told me the test revealed Trisomy 21. I had imagined before this how I would feel if I got this call. My younger, unmarried, childless self would have terminated a Down syndrome pregnancy but I wasn’t sure if I could do that now that I had become a mother. Furthermore, we have good friends who are happily raising a high-functioning child with Down syndrome. I thought about them a lot.

But the second I heard the news, and it was real, not hypothetical, my heart broke.

I was devastated.

My thoughts immediately went to my daughter. We are so lucky that she is healthy, happy, strong and bright. She is everything to me, and having a sibling with potentially severe disabilities would change the rest of her life. Once my spouse and I are dead, the caregiver burden could fall to her, and that didn’t seem fair, either.

I called my husband, who was still abroad. I told him “I can’t do this. “ I was afraid he wasn’t going to agree, so I was incredibly relieved when he said “I’m on the same page.” I told him the next step would be an amniocentesis, just to confirm, but I knew the accuracy of the Harmony test, so I held no false hopes.

I went home to tell my immediate family. My somewhat religious mother took it the hardest, almost harder than me it seemed. I also have a sister-in-law who is struggling to become pregnant and she also happens to be a teacher for children with special needs. Understandably, my circumstances were difficult for her to swallow. I hadn’t really wanted to tell her at all, but other family members argued it would be worse if she found out later on that I had withheld the truth from her.

Everyone else was incredibly supportive. Many of my closest friends are also physicians, and understood what I was up against. The rest of my immediate family was also very compassionate. At first my mom couldn’t understand why I didn’t come undone from grief, as she was. I couldn’t explain to her that I was in survival mode. I didn’t want my daughter to see me sobbing around the house. I had to rearrange my shifts at work. I had to schedule the D&E. I didn’t feel the need to justify this incredibly painful and private decision with others and I surrounded myself with people whom I knew would be supportive.

Fortunately, my mother came to sympathize with what I was going through. I think the turning point for her came a couple of days after, when she saw an elderly mother pushing a 40-something delayed woman in a wheelchair through the grocery store. It also made her reflect on herself when she was pregnant at age 36 and declined to have prenatal testing. “I really didn’t think about what that would have meant, to have a child with disabilities, and how that would have affected our family.”

I still don’t feel like I need to defend my decision to anyone, but in this forum I want to share that my career as a physician and having had the opportunity to care for patients with disabilities who make it to adulthood certainly played a role. There is nothing sadder than a 45 year old who lives like a 90 year old, in a group home, abandoned by family, plagued by medical problems prematurely.

A Down syndrome infant is as lovable as any other infant, but I also knew mine had a heart defect, would be born only to have to have life saving open heart surgery, pain from the surgery, many drugs, and if that was survived, several more weeks in the neonatal ICU. Then he or she could face years of torment from peers; everyone knows how mean kids can be. And that is a good-case scenario. The worse case scenario can include severe seizures causing brain damage and even more developmental delays. And from a non-professional perspective, although I’m not religious, I try to live my life treating others as I would like to be treated… the Golden Rule, in a nutshell. I wouldn’t choose a life of struggle and suffering like that for myself.

I had to wait another week to be at 15 weeks for the amnio. That was the worst week of my life as my belly continued to expand with a pregnancy I knew I would be terminating. My sister came with me and I didn’t want to watch the screen. I really needed to emotionally disconnect myself in order to get through it. Throughout the entire ordeal, spending time and focusing on my daughter was an amazing distraction. There is a special place in my heart for people who have had a loss like this who do not have children yet. I can’t imagine how much harder that would make a situation like this.

The night before my D&E I was just over 16 weeks. My spouse was still abroad. I cried in my dad’s arms in the kitchen. I wasn’t ambivalent, but I felt so horrible that I even had to make this decision. I emailed with a friend who had terminated a 2nd trimester pregnancy due to severe defects. At her advice, I wrote the fetus a letter that I will probably never be able to bring myself to read.

My recently enlightened mother drove me to my D&E. As we drove the hour and a half to the private clinic, she even joked “I never thought I’d be driving my 35-year-old to her abortion.”

There were protesters at the clinic, as we had been warned. I was more worried about how that would make my mom feel than me. They made me furious. These zealot women didn’t know me, or the pain I was going through. Didn’t know that I was already a mother who desperately wanted another child. Didn’t know my fetus wasn’t healthy. Didn’t know I was a medical professional who of course knew her alternatives

The whole day went very well, and the procedure was physically painless. The nurses were sensitive and always seemed to know the right thing to say. The doctor was very generous with the sedatives and pain medicine. I knew the pain medicine would cross the placenta, and also put the fetus to sleep. I also knew that fetuses before 29 weeks aren’t known to have pain receptors anyway. Knowing that the fetus wouldn’t suffer brought me a lot of peace of mind. After the procedure, I felt such incredible relief. I hadn’t expected to feel relief, but I realize in retrospect it was the first step in moving past the devastating situation by simply having it over. We stopped at a pharmacy to pick up my medication and I threw up in the parking lot. A long drive home after a day of not being able to eat and having outpatient surgery with anesthesia can do that to you.

The next day I went to work. I really needed to work. I have found that taking care of other people who are sick to be an incredibly rewarding distraction. The day after that my husband was finally able to fly back to the States. We had talked a lot on the phone and there wasn’t a lot more to say once it was over. He copes in his own way and probably being removed from the whole procedure was better for him anyway.

People who have suffered losses have told me that time really is a great healer. I have discovered that to be true for me as well. The rest of my summer I crammed in as many follow up medical appointments as I could to make sure everything would go back to working order. The desire to get pregnant again as soon as possible was overwhelming and almost compulsive and unhealthy. At the time, getting pregnant again seemed like the only thing that would help me get over my grief. Of course, this is something we have very little control over, especially people like me who have struggled with infertility.

I’m writing this story about a week after what would have been my due date. It has been about six months since the D&E, although it feels like a lot longer. My body went back to normal really quickly, and so did our lives. We’re back living abroad and recently discovered we are pregnant again. Its very early but I am trying really hard to remain optimistic. I am choosing to be hopeful. I know now what we are capable of enduring.

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