“It’s Down Syndrome.”
I heard the voice say on the other end of the phone. Her voice had a soft melody to it, with the sentence ending on a slightly lower note than the beginning. I had been waiting anxiously, eagerly, for this phone call since I had the CVS three days before. I spent the weekend researching all I could regarding increased nuchal translucency and enlarged bladder. Most of what I read terrified me. In all that I found, aside of the obvious desire for normal results, I hoped it was Down Syndrome. The other likely scenarios were Trisomy 18, which would have brought a harder choice or megacystis, where the baby would die. At that point in my pregnancy, I could not imagine carrying a baby to term that I knew would not survive. Down Syndrome was livable, not what I had pictured, but totally livable.
“Ok. Ok.” I said, exhaling, trying to calm my racing heart. “That’s ok. It’s not Trisomy 18. My baby can live.”
“Do you know what you want to do?” my midwife asked in a non-judgmental way.
“I want to continue. I need to talk about it with Chris, but we discussed the scenario, and I think we’re ok.”
“Do you want to come in right now and talk?” she asked.
“No. it’s ok. I have three more patients to see anyways. It’s ok.” I was surprisingly calm, no tears. We said our good-byes after she told me I could stop by afterhours if I needed to.
As soon as I got off the phone, I called Chris and told him the news. At first I heard what I thought was disappointment in his voice, but realized later it was simply surprise. Based on the nuchal translucency, we were given a 70% chance that the baby would be chromosomally normal. In his world, those are pretty good odds. In mine, I knew what those numbers really meant. We agreed to talk more when I got home. I then went and saw my next few patients all while keeping it together as this huge life changing news rattled my head. Little did I know that this would be practice for what was to come.
One year ago today I learned that the baby I was carrying had Down Syndrome. I took the news in stride. Tears came later when I thought good and hard about how my life would change, but I didn’t doubt my ability to raise my child with love regardless of her diagnosis. Over the next few months I prepared myself. I read memoirs of those raising babies with Down Syndrome. We met with a special needs lawyer to get our finances in order and prepare for the future of our child. We attended our state conference for Down Syndrome, learning about the local services, preparing for potty training and meeting parents of children with Down Syndrome. We found a pediatrician that was very familiar with Down Syndrome, researched day cares accustomed to Birth to Three and started collecting names of good therapists. We embraced the diagnosis.
Perhaps you can understand the enormity of my loss. Sometimes I feel like I have to justify my grief- yes, I’m sad even though she had Down Syndrome. Yes, I’m sad even though she would have been very ill. Yes, I’m sad even though we were told she might die. I know I don’t have to justify my grief to most of you; you are all so kind. I think I’m simply processing the special injustice of saying yes to so much and not being even given the chance to parent this baby beyond the NICU.
What injustices do you mull over in your mind?