Congenital Heart DefectsStoriesTrisomy 21 (Down syndrome)

The Space Where She Is

The space where she is

I knew in my heart that we were choosing the path of least suffering, for us, for our son, for our unborn baby girl.

By Jemma

After dealing with thyroid cancer, surgery, and radioactive iodine, my doctor had given me the go-ahead in June to start trying for our second child. We took the test on a Sunday in September while our almost-three-year-old napped. There were two clear lines. I was relieved and excited. My first pregnancy had been a good one and our son was healthy and strong from the moment he came out. As a nurse, I knew all of the possible things that could go wrong but as my oldest friend wisely said, getting pregnant is always a huge leap of faith. And somehow, I thought the hardest hurdle was getting pregnant. We decided to wait until I was thirteen weeks to tell our son, just in case. But we also started planning things around the May due date, making plans about which family members would come and when, and talking about how our summer would be different.

I started getting nauseous right at seven weeks, same as with my son, and I was bone-tired starting a week or so later. Otherwise, everything was going well.

I was at work when I got a message from my midwife’s office asking me to call them ahead of my appointment the next day. I knew immediately that it must have something to do with the cell-free bloodwork I’d had the week before, the one that tests for chromosomal abnormalities. Since I work in the hospital, I am able to look up my health records, and when I couldn’t reach my midwife’s office, I looked it up myself. I knew I wouldn’t be able to focus on anything else until I knew.

There it was. The bloodwork had come back with a 96% chance that the baby had Trisomy 21, also known as Down Syndrome. It also said the baby was a girl.

In the few weeks that followed, I went through several of the stages of grief. I was in denial at first, thinking that since I knew a few children with Down Syndrome, I understood the full spectrum. I felt anger at myself and my body. I felt anger at my husband for not being as sure as I was that we could do this. Then I felt sadness and loss when I realized maybe we couldn’t do this.

We needed to have an amniocentesis to get more information and a definitive diagnosis. When we got to our appointment the ultrasound tech said that she would be doing a thorough ultrasound and then the doctor would come in to do the amniocentesis. I could see the ultrasound images on the big screen in front of me. My husband told me he couldn’t look. He sat there, holding my hand and averting his eyes. As soon as the tech finished and left the room, I turned to my husband and said, “Something is very wrong.” He asked how I knew and I told him that I could see that baby was measuring many weeks too small and the tech had kept going back to look at her heart.

When the doctor came in she said that we couldn’t do the amniocentesis because my membranes weren’t fused but that it may not be necessary. The baby almost certainly had Trisomy 21. In addition, she was not developing well and had fluid in her brain, spine, and lungs. Her heart was not developing correctly. They couldn’t tell if it was just being affected by all the fluid that was accumulating in her chest. The doctor was very supportive. She brought in the genetics counselor whom we had seen previously and felt connected to.

I sat in that dark room, held my husband’s hand, and cried. Over and over I said, “Something is really wrong with our baby.” We were told that the odds of her even making it to full term were slim and that many times babies with defects like hers end in late-term miscarriages.

With so much sadness my husband and I decided to terminate the pregnancy.

The day of the abortion felt so surreal. Neither one of us slept much the night before. We were up at 5 am and drove to the hospital in a snow and ice storm. As I sat on in the pre-op area in my paper gown. My husband said, “At any point, if you say you don’t want to do this I’ll take you out of here.” I loved his gesture of unconditional support. I didn’t want to do it. But I knew in my heart that we were choosing the path of least suffering, for us, for our son, for our unborn baby girl.

I was led into the operating room by three women who held me up as I cried. I was 17 weeks along and it was December 17th.

Today is May 26th, Mother’s Day, which would have been her due date. My heart hurts. It is true that we can miss someone who only ever existed inside of us. This baby will always be a part of me and of our family. One day, we will tell our son about her.

In the days following the abortion, my family would check-in and ask me how I was feeling. I kept saying that I was relieved to be on this side of things. What I meant was that the time between making the decision and having the abortion was extremely painful and weird. I was pregnant but knew it would end, and not in the way I wanted it to. So being on the other side of the procedure and just not being pregnant anymore felt terrible and sad and awful. But at least it was over.

Even with time and perspective, I’m not sure I am on the other side of it. I’m not sure there is another side. There’s just this. Just a space where she should be. That sounds sad and sometimes, like today and on Mother’s Day, it is sad. But sometimes it is just a space. It’s not a space that anyone else will fill. And that’s okay. Maybe it’s not a space where she should be. Maybe it is the space where she is.

 

Photo by Kite Fulton on Unsplash