The manner in which we learned our daughter’s diagnosis is still a sore subject for us. During my pregnancy, the quad screen showed an elevated risk for Down syndrome – 1 in 227. High, but not earth-shattering by any means. Two different ultrasounds showed no soft markers, and we were sent into the last 20 weeks of pregnancy with high hopes and assurances that our baby was just fine.
Our baby girl came into the world at 40 weeks and 2 days. Nothing strange about the pregnancy or delivery. She wanted out, and delivered before the doctor was even there to catch her. I knew immediately she and I would get along just fine – this is a girl who knows what she wants!
We spent a beautiful day together, surrounded by family and just glowing with love. She was beautiful and tiny and pink and squishy and all bundled up, her tiny head covered in a hat I made for her. She nursed and slept and went from lap to lap without complaint. She was loved and admired, and we all made much out of each little movement.
At about 5pm, the nurse wheeled our baby down the hall for the newborn evaluation. A little while later, a pediatrician we have never met strode in, arms across his chest, announced our baby had Down syndrome and asked if we had any questions. Our baby was in another room, he didn’t sit down, he didn’t make eye contact. He just stood there like we were a waste of time.
We stammered out just two questions – why did he think she has Down syndrome and how worried should we be? He referenced our elevated risk, her “floppiness” and her small ears. I was so angry but couldn’t get the words out. Aren’t all 8 hour old babies floppy? And don’t all babies come with small ears? I was so mad that our baby could receive such a diagnosis based on what seemed like so little evidence. He said we should be seriously concerned and left. He didn’t tell our nurses or our OB.
My reaction was visceral. I wailed, and I mean wailed, “My baby, my baby, my baby!” and it came straight from my core. I couldn’t believe the flood of emotions that came over me, and how different they were than the emotions I had already filled my heart after delivery. How could I have not known? I had stared at my baby all day long and didn’t see a thing. How could this happen? I had done everything right during pregnancy. She didn’t have any signs! I was told my baby would be ok. And now she wasn’t.
My husband and I ran down the hall to find her and scared the nurses at the station. They had no idea, and so for the first time in my life I stammered out the words “My daughter has Down syndrome” and plastered my face to the nursery window. There she was, all bundled up and asleep, my beautiful girl. The nurses were upset they hadn’t been given the heads up (only the nurse actually in the nursery knew since she had been there during the exam) and my OB just apologized that he hadn’t caught it sooner. He truly thought she did not have Down syndrome.
So…the point of all this? A few weeks after she was born and the initial shock wore off, I wrote a letter to the patient advocate about what happened. The way our nurses treated us afterward was a stark contrast to the pediatrician’s demeanor and delivery, and I wanted to both praise the nursing staff and describe the doctor’s behavior. I tried to be polite and professional while standing my ground. This simply cannot happen to another family at this hospital.
The Chief Medical Officer read my letter and wanted to speak with me. That’s just what I did this morning. It was hard to relive that day, and I suppose writing about it now is another way for me to process, but I’m glad that I did. The CMO was kind, understanding, and genuinely interested in hearing my feedback. We talked about how things could be different in the future and he affirmed our feelings of frustration and sadness. Among the items on his action plan is to have the pediatricians, OBs, and nursing staff read this article about how to deliver a Down syndrome diagnosis:
I am so happy I took the time to inform the hospital. I don’t expect immediate change, but if I prevent even one other family from having our experience, then I am satisfied.
I guess this is my first experience advocating for my daughter, and I know there are many more times to come. I am empowered by the positive outcome of this situation!