Here is part 2 of Chapter 1. In case you missed it, you can catch up where this part picks up by first reading part 1 here. This post describes the first few minutes after my daughter was born and two words were said that changed our lives.
Her skin was a healthy rosy pink. She had a shock of dark hair. Her eyes remained mostly closed and were cute little slits. And, her lips were this bright magenta color that made us later comment that it looked like she was wearing lipstick.
The OB handed our daughter to April to cradle her skin-to-skin. I looked down at this new little life that was ours and marveled. Growing up, I had been surrounded by boys. I had an older brother by three years and a fraternal twin brother who was older by five minutes. My father also came from a family of all boys. My poor mother had to put up with all of us and our roughhousing. So, my hard wiring was pretty much devoid of any nurturing examples of baby girls. But, still, I had watched enough soap operas with my grandmother and seen enough movies with happy endings that my mind had already raced forward, as I stood there gazing upon my new little girl, to a scene of me proudly walking her down the aisle on her wedding day.
The nurse then came to take our daughter to the warming table, where she would be weighed and have the Apgar test administered. I heard a nurse shout out an initial Apgar of 7 and then the second Apgar of 9, both considered good numbers for a newborn, based on what I recalled from the pregnancy books we had read. I also heard someone say there was a pregnancy down the hall that was in distress, so the high-risk nurse needed to attend to that. As she was leaving our delivery room, she called out over her shoulder:
“Doctor, check the baby. I think she has Down syndrome.”
Off the nurse went. And, time stood still.
The nurse’s words echoed in my ears “Down syndrome. Down syndrome. Down syndrome.” I looked up from my wife and the movement seemed to give me verdigo, with the flurry of activity of the nurses seeming to whirl around us, the light blues and greens of their scrubs, the bright lights of the delivery room, all just whooshing around us. I looked down at April and in my head I asked, “Was the nurse talking about our baby? Our beautiful little girl we had just met? That cute, wriggly, little pink thing over there getting swaddled by a nurse?” April looked up at me with wide eyes, her mouth open as though she had lost her breath. She was just asking, “What?” “What?” “What did the nurse say?”
There were whispers amongst the nurses and the OB. The nurses briskly filed out of the room. In what could have only been the span of mere seconds, the room had gone from being full of people and the noises of their talking, the sound of their booties scuffing along the floor, medical instruments clanging on metal trays, to a hushed silence, interrupted only by the occasional beeping of a monitor.
Our OB came over to April’s right side and lowered herself in her rolling doctor’s stool. She said that yes, they suspected our daughter had Down syndrome because of some physical characteristics they had noticed, like the slight up-tilt to the shape of her eyes and the way her arms and legs splayed out from her body. I understood what she meant about the eyes. I had seen people with Down syndrome on various TV shows and reports and knew about the distinctive facial features. What the splaying of our daughter’s limbs meant, I had no idea.
The OB said some other words, words that I can only hear now in my memory as a garble, as I was processing them through the shock of the news. Looking back now, I felt like I had a cold bucket of water thrown in my face and then someone kicked me in the gut sending me stumbling backward, falling down into a very deep, dark hole. The room seemed to close in around us, with the lights dimming such that there was just a tiny circle around me, my wife, and the OB.
The OB continued to mumble words. I’m sure she annunciated them well and was very precise with her language, but that was how I heard her in my ears. All I can really recall was not what she said, but how her voice had changed. Just before our daughter was born, she had been speaking in a very direct, clipped way. Understandably so, given the situation, wanting to be focused on having a successful and healthy delivery. Now, her voice was hushed, quiet, sullen even, but it was clear she was trying to soften the impact of what the nurse had shouted.
I’m sure I said something. I’m rarely at a loss for words. For the life of me, I can’t remember anything though that I asked or that the OB answered in response to my questions. All I remember is when the OB stopped mumbling words about Down syndrome and paused to allow us to process it and ask a question, April looked at her, plaintively, and asked, “What’s the life expectancy?”
I had grown up in a church where an older couple had an adult son with Down syndrome. They were not every-Sunday sort of churchgoers like my parents made sure we were, but they were still regular attendees. April’s question caused my memory to send up an image of that young man, non-verbal, slack-jawed, shuffling in gait, always having one of his arms held by one of his parents, leading him about. I remembered our church had taken a trip out to where he lived. A place called Cedar Lake Lodge, where the main building indeed looked like a ski lodge with its pitched roof and large windows. So, I at least knew that some people with Down syndrome lived into adulthood. But, April did not.
April was born in England and lived there until she was eleven. She had not had any interactions with individuals with Down syndrome, adults or otherwise. April, though, had her motherly instincts stronger than ever. She asked her question because she wanted to protect her baby and ensure her newborn would have a long life. I do remember those words of the OB that the life expectancy was in the mid-50’s to 60’s and had been increasing due to advances for individuals with Down syndrome.
After what must have seemed to her an appropriate amount of time, the OB took her leave from us, saying that we could have the room as long as we needed. She left, and April and I collapsed into each other, sobbing.
Recent Comments