D&CStoriesTrisomy 21 (Down syndrome)

I Just Wasn’t Expecting This

I just wasn't expecting this

I just wasn’t expecting this. I hadn’t had time to do any research. I couldn’t think of any questions even though my mind was racing and my hands were shaking.

By Stefanie

A difficult beginning

I’m 39 and had three previous miscarriages (no living children). I had my first miscarriage at 36, then two more miscarriages back-to-back to start off the absolute worst year of my life—2020. Based on all of this, a recent blood clot I had, and some test results, I was put on daily injected blood thinners for my fourth pregnancy starting at five weeks. After I passed the seven-week mark in my fourth pregnancy, I felt that maybe the blood thinners had been the answer all along. My husband and I finally felt like we could start getting cautiously optimistic because we had never made it that far. I was also so sick with nausea, vomiting, and fatigue. At the time, I felt that was a good sign because I’d felt fine during my three previous pregnancies that ended in miscarriage.

At around 10 weeks, I got the Harmony NIPT blood test suggested by my family doctor. Mostly, we were excited to find out the sex of our baby. Looking back, I was very naive given all the miscarriages I’d had and my diminished ovarian reserve diagnosis. But since we’d already been through so much, we figured any more problems “couldn’t happen to us.” It was finally our turn to be happy.

As we approached the 12-week mark, we were beyond excited and started planning how we’d tell our family and friends. At my ultrasound near 12 weeks, I saw my baby moving around a lot and sucking his thumb. I was in love! I texted a picture of the ultrasound printout to my husband (who wasn’t allowed to come with me to anything because of COVID-19 restrictions). We gushed about how cute our baby was while I waited for my next appointment with the MFM specialist.

I just wasn’t expecting this

After the ultrasound, the MFM specialist said he was concerned about the nuchal translucency thickness of 2.4 combined with my age. But he said the cutoff is 3, so further testing could reveal everything was fine. I interrupted his explanations of all the additional tests available, telling him I already had the Harmony NIPT and was awaiting those results.

The timing of what happened next was surreal. There was a knock at the door and he left. Honestly, I thought it seemed like a really inappropriate time for him to leave. I was starting to feel scared and frustrated. He returned to tell me my Harmony NIPT results came back and were positive for T-21.

He had me Facetime my husband who was shocked to step out of a work meeting into this conversation. We decided to get the diagnostic CVS performed that day. The specialist asked if I had any questions. I froze. I’d taken in all of this information in a matter of ten minutes. I told him I just wasn’t expecting this. I hadn’t had time to do any research. I couldn’t think of any questions even though my mind was racing and my hands were shaking.

The specialist told me not to lose hope.

The results and a decision

The CVS results were late coming back to us. I spent those long days of waiting in bed crying, researching false-positive NIPTs, reading stories from families with babies and children with Down syndrome, and stories from women who terminated for medical reasons. It was hard to find stories from families with teens/adults with Down syndrome, which was a big concern my husband and I had for our son. We knew our families would open their hearts to our son with love and compassion no matter what. But we both also knew firsthand that this world is not a compassionate place, especially for people with special needs. My 14-year-old stepson has autism, which has already brought a long series of challenges for him and my husband. And he is on the higher-functioning end of the autism spectrum. There is really no way of knowing what end of the Down syndrome spectrum our son would be on.

My heart ached no matter what scenario I pictured for my son. I already loved him beyond words.

On the day we received the CVS confirmation of T-21, we decided our son wouldn’t be able to be who he really is in a body that would always put him at a disadvantage. Because of our love for him, we couldn’t bear to think of watching him struggle throughout his life with the physical, mental, and social challenges that can go along with T-21. I worried he would get bullied or abused, or not be able to live independently, or have children of his own, or understand what happened to his loving parents when we inevitably got too old to take care of him. All I wanted to do was protect him from all of that. At the same time, I didn’t want to lose him. I was also very aware of the pressure of time ticking on in this pregnancy while we tried to make the most difficult decision of our lives.

I had my husband schedule the termination appointment. I just couldn’t do it.

I would be 14 weeks exactly on the day of the Friday procedure. In the week leading up to it, I was scared for my baby and obsessively researched his ability to feel pain and fear at 14 weeks. The science says no, but not knowing for sure will haunt me for the rest of my life. My husband dealt with the situation by keeping himself busy, but I woke up in the middle of the night to him crying next to me a few times. Even my dog whimpered alongside us the week leading up to and after the termination, sensing all the pain and loss. The night before the procedure, I dreamt that I was holding and loving my son and talking to him, and he was a healthy happy baby. I woke up to reality and felt sick and terrified.

At the hospital

Everyone at the hospital was very nice and so cheerful that I wondered if they even realized why I was there. The question “how are you?” takes on a whole new meaning on the day of a termination for medical reasons (TFMR), and I had to answer it that day at least six times. I told the doctor I was nervous about the laminaria placement as I have been known to have vasovagal reactions in the past. She was understanding, careful, and slow. I only had to have one laminaria, and honestly, the COVID test I’d taken a couple of days prior was physically worse. The doctor let me lay down for 45 minutes after the laminaria placement so I wouldn’t pass out. I took this quiet time to say goodbye to my baby.

Once I finally made it up to the surgery floor, everything happened pretty quickly. I met the surgeon who would be performing the D&C. I asked her if my general anesthesia would put the baby to sleep as well. She said “probably” and I knew that was the best answer I was going to get. I was sad and terrified but numb by this point. I needed to be strong now because it truly felt like the point of no return. Right before they put me to sleep, I heard the doctor request some additional meds including OxyContin—not sure if that was for me or the baby, but I hoped it would help him further. I sent thoughts of love and apologies to my baby and tried to think of a place with rainbows and sunshine where he would be set free from his body that I was unable to create properly for him.

All of a sudden, I was awake with a strong feeling of emptiness and “what have I done?”

Crying, I drank the water and ate the crackers the nurses gave me. My baby was gone from my body but I hoped he was with me. The nurses started talking about lunch, and I knew they were going to need me to be on my way faster than I would’ve liked. They had already called my husband to pick me up. Before I knew it, I was dressed and being wheeled down to my husband.

Home again

We got home early afternoon and stayed in bed crying with my husband and dog for the rest of the day. I miss my sweet baby boy and always will. I’m at the point where I cry every time I look at myself in the mirror, and I’m taking some time away from work and anything social for a while. I don’t know when I’ll start to feel better or when I’ll figure out what I was supposed to learn from this experience. I do know that we are done trying to conceive naturally because I’m terrified of something like this happening again. As many have said before me, I wouldn’t wish this experience on my worst enemy. Because of my age, I know we’ll need to start considering In Vitro Fertilization with Pre-implantation Genetic Screening sooner rather than later. I know this will bring its own challenges. I’m not sure that I can handle any more emotionally painful pregnancy experiences, but the determination I feel after each loss continues to surprise me.

In my experience, the reproductive journey can be a cruel and isolating place. Among my family and friends, in my neighborhood and on TV and social media—seemingly everywhere I look—I see only happy babies and parents. Websites like this one are among the few things that have offered me comfort. My heart goes out to all of the other parents who have had to make the decision to TFMR and/or who have lost a wanted pregnancy.


Editor’s Note

The author’s concerns about fetal pain during abortion are so common that we felt it was important to address this issue. According to the American College of Obstetrics & Gynecologists (ACOG), the capacity for a fetus to experience pain “…does not develop until the third trimester at the earliest, well past the period between 20 weeks and viability. The evidence shows that the neural circuitry necessary to distinguish touch from a painful touch does not, in fact, develop until late in the third trimester.” While concerns about fetal pain during abortion are certainly understandable, the science on this well-researched topic is clear. Read more at ACOG.

 

Photo by Jonatán Becerra on Unsplash