5 Feelings I had When I Found out My Baby Has Trisomy 13
I never thought a double stroller would bring me to tears, but it did.
We were at a fall festival, chatting with the families of some of my husband’s colleagues and there were a couple of double strollers parked in a row while the kids played. Being 23 weeks pregnant with our second child I thought, “I should ask how they like these different types of strollers.” The next thought broke my heart. “Actually, I’m probably not bringing a second baby home, so I won’t need one.”
Three weeks earlier, at our 20 week ultrasound scan, the doctor saw two things that were concerning: there was excess fluid in the brain and the left side of the heart was underdeveloped. I was terrified. My undergraduate degree was in Physiology and Developmental Biology, so I knew something must be very wrong. During development, there are rarely problems in both the driving powerhouses of the body without a greater underlying issue. They immediately took a blood sample for genetic testing to find out if our baby had trisomy 13 or 18. Thus began the longest two weeks of my life…
Best case scenario: we had a baby that needed immediate heart surgery and, at the very least, had a Dandy-Walker variant that makes learning movement difficult. Worst case scenario: our baby had trisomy 13 or 18: a rare genetic condition that causes changes in the body that are so drastic that most babies are incompatible with life outside the womb. A condition with a 50% chance our baby would miscarry, so we would never see his living face. Even if he did make it to birth, these babies have a 10% chance of surviving past a year, with most lasting fewer than ten days.
Over those two weeks, I reviewed old textbooks and new research articles and found some hope that our baby would be able to survive whatever was going on. By the end of the two weeks, I was feeling confident that, though life might be different than what we expected, we would most likely be bringing home our son.
When we got to our appointment, we received the worst possible news. It was trisomy 13. To say my heart was broken feels like an understatement. It felt like everything broke. The hardest part was changing the picture in my head of the future my daughter would have with him. I would think, “Jane is going to love helping get him dressed” or “She is going to have so much fun trying to read books to him.” Then my heart would break all over again as I remembered that she probably won’t have these experiences with him.
To add to the struggle, I worked from home and got most of my work done during her afternoon nap, but, after a morning full of this emotional roller coaster, I my ability to focus wasn’t nearly what it needed to be. I was frustrated that I was losing another baby. I was frustrated and stressed that I couldn’t stay on top of my work. I was frustrated that I couldn’t escape the pain. Every kick I felt the baby make, every ad about baby supplies, and every moment I thought “Jane is going to be such a good sister!”, I was reminded that I wasn’t going to get the life I wanted.
Shortly after that life-changing appointment, our daughter got sick. Nothing terrible, just the common cold, but it shook me. I had ended up in the emergency room with an ectopic pregnancy at the beginning of the year, and I was going to lose the baby inside me due to a 1 in 30,000 rare genetic mutation. Even though I knew it was unlikely, I knew how easily my little girl could be taken from me as well, and it terrified me that I could lose all my babies in one year.
There was only one idea that helped bring me some comfort… I started thinking of the baby as doing things with us right now. The baby was also cuddling Jane as we put her to bed. He was also making cookies with us or going to the park. He was also so proud and excited when Jane peed in the toilet.
I didn’t want to sit home crying, waiting for my baby to die. I wanted to enjoy the little bit of life I had with him. At first, the thought of him having all these moments with us just continued the sorrow. It turned every moment into a reminder that he wouldn’t share many future moments with us. However, as time went on and I continued focusing on these moments, the sorrow softened into contentment and then, dare I say, I even started finding a type of joy in them. I started to feel like I did when our daughter was first born. Like I was carrying him in my arms, introducing him to the world. Though these moments of peace felt a bit forced, they were
Gratitude and Hope
Honestly, I still don’t think I have completely accepted that I might never see my son’s living face, and I don’t think that is a bad thing. Holding on to a little hope and gratitude makes it easier to be happy during this pregnancy. Though I hope see his living face, for now, I am grateful for every kick that reminds me that he is still here. I hope that we get to watch him grow outside of me, but I am grateful that I can provide a safe space in me to grow for a while. No matter what happens, he is my son. I am grateful for every moment I get to take care of him. I hope for as much time as possible to enjoy being his mom.