We were really happy we were pregnant. At thirty-five years old, I was surprised I had gotten pregnant so easily. It seems I had watched all of my friends struggling to conceive. Initially the pregnancy was moving along nicely, with the exception of this nagging feeling I had that something wasn’t right. I couldn’t put my finger on it, but I was filled with fear and nervous energy. Working late one night I could feel my uterus cramping, and I was scared that my worst fear was being realized. Within hours my husband and I would be in the emergency room. My heart raced as the doctor rubbed the sonogram wand across my belly searching for our baby’s heartbeat. Silence.
A few weeks after having the DNC from my miscarriage I returned to the doctor for a routine follow-up. At the appointment, the doctor told me that I had a sickle cell trait, and that he’d like to do some blood work on my husband to see if he did too. I returned home with the news, and without blinking, my husband said that he was certain he did. He remembered a discussion with his pediatrician when he was about five years old. He’d never forgotten because the doctor told him that he’d be fine, but he would need to be careful when he wanted to have children.
I decided we would try again, but we would not carry a child with sickle-cell disease to full-term.
Sickle cell was a game changer. I had watched friends suffering through bouts of sickle cell disease. Long stints in the hospital, uncontrollable pain and helplessness; I just couldn’t imagine parenting a baby with sickle cell. After deep contemplation, I continued with my pregnancy preparation, and my husband and I decided we would try again, but we would not carry a child with sickle-cell disease to full-term. Before long, I was pregnant and the waiting game began as my husband and I prepared for the genetic testing.
At 20 weeks I had the amniocentesis. The three week period we waited for the results seemed like an eternity. Finally the call from the geneticist came, “Your son is not testing positive for sickle cell disease, but I’m afraid he is showing that he will have Down syndrome.”
Down syndrome is something we had never considered. Before the testing, the geneticist said I had a one percent chance of having a child with Downs. I was so confused about moving forward considering now my chances of having a baby with some type of genetic condition had just increased exponentially. I could terminate this pregnancy only to have another pregnancy where the baby tested positive for sickle cell.
I toiled, shifting in between gratitude and regret that the miscarriage had offered me this information about my own health and the possible challenges I faced conceiving a healthy child. This new diagnosis was not as easy to understand as sickle cell. Down syndrome is a spectrum that may or may not include various health challenges and mental delays. People with Down syndrome live productive lives while people with full blown sickle cell live lives side-swiped by long bouts of pain and hospital stays.
There were times I felt as if the gods where playing a wild trick on me. I decided there was no easy way out of this but to go through it. I was already 20 weeks pregnant and bonded with the baby forming within me. The thought of terminating a pregnancy without guarantees that this baby would be gravely ill was deeply unsettling. In my mind, I knew if I chose to abort, I was attempting to find the easy way out. It was clear that the easy way had been taken off the table the night I had the miscarriage. I decided to play the hand I had been dealt to the best of my ability. If my choices were Down syndrome or sickle cell, Down syndrome it would be.