They gave me more than I could ever give them.
It’s rare that I attend deliveries of babies with Down syndrome — I hadn’t been to one in more than five years. But a few days ago, I attended two such deliveries on two consecutive days.
New prenatal testing for Down syndrome is now almost 100% accurate. The false-negative rate — the number of moms told that their babies don’t have Down syndrome but really do — is less than 1%. So, we usually know when a baby has Down syndrome long before delivery. But that’s not what happened for this baby.
Her Down syndrome diagnosis was a surprise at delivery. Her mother had received all the best prenatal testing from an excellent obstetrician. She had “slipped through the cracks,” part of that fraction of 1 percent of trisomy 21 pregnancies that appear normal on all the prenatal blood tests and ultrasounds.
“Trisomy 21,” the medical term for Downs, is a syndrome that includes more than just the characteristic facial features and cognitive challenges for which it’s known. These babies can be born with a host of congenital medical concerns that may lead them to need newborn intensive care at delivery. Accordingly, most babies with Down syndrome have planned births during the daytime with neonatology in attendance. As a general pediatrician that works a lot of night shifts, I don’t often get called to these deliveries.
I was called to this baby’s delivery because her mother was critically ill with a seizure disorder. I was there to take care of the baby so that the nurses and obstetrician could focus on the mother. It was around 4 AM, an hour when things usually slow down at Progress West Hospital, the St. Louis Children’s Hospital Satellite facility where I was working. As I walked into the delivery room, a surge of adrenaline dissipated my fatigue. She was handed off to my care as soon as her tiny body emerged through a sea of monitors and IV tubing. While everyone else focused on a mother who was facing possible death, I looked at her narrow eyes and tell-tale facial features. She wasn’t breathing. I pumped air into her immature lungs with a preemie-sized CPR mask. I called another nurse to help me with the baby, trying not to disturb the team of medical professionals in the room who were taking care of her mother. The nurse took one look at the baby and I knew she was thinking what I was thinking. After about 10 minutes, she was able to breathe on her own, and I put the bag and mask down. Her father slipped away from her critically ill mother for just a few seconds to peak at his new daughter. I wondered if he saw what I saw. I didn’t say anything. No one took pictures. This was not the happy delivery these parents dreamed of.
Just hours before, these parents thought they were having a healthy baby after a healthy pregnancy. Now, both mom and baby were headed to intensive care units.
I’d been trained in medical school how to clinically diagnose trisomy 21 at a delivery, but in 11 years of medical practice I’ve never had to do it before. This was the first surprise Down syndrome delivery I’d ever attended. I admitted her to the neonatal intensive care unit and consulted with the neonatologist to confirm my suspicions. Yes, it looked like Down syndrome; we’d confirm it with blood tests, but we already knew the answer. The obstetrician shook his head and promised to recheck the records of her prenatal testing. How could this have happened?
It was a long walk to the adult intensive care unit where the baby’s mother had been transferred. I rehearsed my words as I walked, trying to think of a way to be positive while talking to her parents about their beautiful new baby with an extra 21st chromosome. The baby needed help breathing and eating, and she would need more tests to be sure her heart had formed correctly. We also had concerns about her enlarged liver. The lady at the reception desk wanted to know why a pediatrician needed access to this restricted adult intensive care unit — yes, this whole story was unprecedented. Ridiculous. What were the chances of any of this? Both mom and baby’s conditions defied all odds, and not in a good way.
And then, unplanned, the most beautiful conversation unrolled between her mother and me. None of those words I had rehearsed came out of my mouth. I told her about another mom I knew who learned of her baby’s Down syndrome diagnosis after birth, and her real story of the joys of this unexpected turn in life. She cried. I untangled the IV tubing so that she could wipe her tears. She told me about her four other children, and wondered how she would explain Down syndrome to them. She told me many more things, and I realized this mother had given me much more than I could ever give her.
The next day, as I sat my call room trying to process this whole story, I was called to another delivery of a baby with Down syndrome.
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