One week after my child slipped away from me, only a few days after my early morning d & c to stop the severe bleeding, still in the midst of waves of grief, swelling and cresting towards me, I was due at the clinic for an appointment that had been scheduled months ago. Two days following should’ve been my ultrasound. I had already angrily scratched out the words on my calendar, my mind furious, my face flushed. Now, here I was, solemnly walking into the clinic, my husband grasping my hand tightly, maybe to keep me from running away screaming. We waited in our own shaded corner of the waiting room, avoiding eye contact. As the receptionist brought us in, she gave me a hug, told me to be strong. My eyes welled up, I thought I’d make it further than this without crying.
Deep breaths, deep breaths. I looked at the ceiling, my hands shaking, remembering the last time I sat on this table. Dr. L was unable to find a heartbeat on the doppler. We heard the whooshing of placenta, my own heartbeat, but not the tiny hummingbird flutter of a baby. Don’t worry about it, he said, these machines aren’t perfect. At that time, I was more than a month from my next ultrasound, but only a few weeks away from a miscarriage.
So here I sat, in the same room that I absorbed all his advice and recommendations on my pregnancy. And now I needed none of it. My pregnancy was gone, as though it had never existed, a blip on the radar, blinked out before it even had a chance to impact the world. But I was that baby’s world. And I felt an impact.
Dr. L came in, imparted his customary condolences and apologies, reassured us that there was no reason we couldn’t become pregnant again (isn’t that what everyone says? a consolation prize. Do you know how terrifying the thought is, even as I wanted it desperately?). My mind faded in and out, I couldn’t focus, I just wanted it to be over, let us out of here, let me get back to my bed.
‘The results came back from your maternal serum screening’, Dr L. said.
The backs of my arms and neck felt dipped in needles. I had forgotten about that screening, the test to see if there were any abnormalities detected in my pregnancy, the test for chromosomal disorders, spina bifida, Down’s. I had forgotten how scared I was at getting a positive result. I had forgotten the fear I pushed away night after night.
“The test showed a positive result for Trisomy 18′ he said.
The floor fell out from under me. There was something wrong with our baby. Our baby was broken, defective (apologies to anyone with T 18 babies, this was a first instinct emotion, panic and anger). I felt a heavy weight on my chest as Dr. L explained that this, as a first screening doesn’t mean that our child had T 18 for sure, but that I would’ve been sent for further testing. As far as he knew, T 18wasn’t a cause for miscarriage. He wanted to research further to ensure that we weren’t prone to this condition, that any child we may be able to conceive in the future wouldn’t be destined for this syndrome.
I stared blankly, my mind in a haze. My heart beating erratically. Once in the car, tears poured out of my eyes.
What kind of a cruel joke has me panicking with devastating news about a life altering condition of my unborn child when that child has already died? How is it that I am still left to feel afraid, nervous, confused, crushed with this new of T 18 when our child was ALREADY GONE? This isn’t fair! I thought. Our baby is dead! Our baby is already dead! Why do I have to imagine our poor little baby, already stolen away, was afflicted with tragic symptoms.
And why do I have to have this extra weight of worry, this heavy presence that this may happen to our next child, if we are able to conceive?
I retired to bed, devastated, enraged. Angry at Dr. L for not hearing a heartbeat, for not sending me for an ultrasound, for laying on just one more concern on an already burdened heart. I wept and wept.
My husband was confused, and his anger directed at me. Don’t you see how this is for the best? he asked. Don’t you see that if we had had that baby, it might have lived a terrible life, struggled and survived in pain, only to be taken away from us very early on. Don’t you see how this made things easier for all of us? We don’t have to suffer and we don’t have to watch our baby suffer.
We don’t have to suffer? I thought.
It didn’t make me feel better. It made the image I had been constructing in my head of a tiny little angel child, cloaked in light, smiling, happy, breathing deeply of life seem damaged and broken. I envisioned a tiny baby with tubes and needles, a baby that would never get to live.
I don’t know why this was harder. Everyone felt like it should have been easier for me, hearing the news. But I felt crushed.
I think what it came down to is that all the consolations, all the kind words saying ‘it’s not your fault’, ‘these things happen’, ‘you couldn’t have known, done something, done anything’, ‘this is so common’, ‘this happens to most women in their lifetime’, ‘this is normal’, all those sweet stories were wrong. This is MY fault. It was me. I am afflicted, damaged, broken. I created this mixture of genes and chromosomes that led to my baby’s demise. There is something shattered inside of my genetic makeup that let our baby die. And that broken shard inside me could mean that this will happen again. We could never have a healthy baby. We couldn’t be happy.
Time passed, both slowly and quickly as it seems to do when we are buried under emotion and exhaustion. Dr. L didn’t call. My own internet research told me that we weren’t at a heightened risk of a child with T 18. I floated on and gained strength. I learned about T 18, I read hopeful stories and learned that though initially the news of the condition brings about terror, horror stories of short lives, devastating prognoses, heartbreaking symptoms, there are children who live fulfilling lives, who grow to become happy kids, inspiring hope in others.
I moved on and moved up. I don’t feel bogged down anymore. I don’t feel broken. Yesterday, I realized I had forgotten the phrase Trisomy 18. I had to look it up, to remember what the condition was called. I’ve allowed myself to let it go, but, I think I will always feel a tiny connection to parents whose children are born with T 18. I will always remember that my first tiny baby, my unborn child who never got to greet the world, may have been a T 18 baby herself. Now, instead of mourning that fact, I am able to imagine who she might have been, and who she might have made us.