A nurse's journey with her extraordinary son.
Miracles happen when we least expect them.
Carol was a seasoned NICU nurse, clinically sharp and caring. Some nurses have an immeasurable sense about a baby’s stability, especially when things are about to go south, and she was one of those at the young age of thirty-four. She would say, “Come over here, Suze. I think he’s starting to crump.” Everyone in the NICU liked her. She was outgoing, cheerful, and perfectly irreverent just when we needed it.
I will never forget the morning Carol was admitted to LDR 8 in my hospital for delivery of her second child. Her pregnancy had been uneventful, and labor and delivery were going smoothly. I was paged to come down to see her newborn son. When I walked in the door, I saw her baby laying quietly on the warming bed—pink in room air, breathing well, and kicking around. Sitting up in her bed she said, “Suze, he’s a little floppy, can you check him out?” As I assessed him, I noted his undeniable features of Down syndrome – slanted eyes, flattened nose and midface, protruding tongue, distinctive ears, palmer creases, and clinodactyly (characteristic incurving) of both little fingers.
Carol heard me sigh, confirming what she already suspected. I quietly but honestly informed her of my concerns, and then added, “There is no heart murmur, so that’s good. We’ll get an echocardiogram today to make sure he doesn’t have congenital heart disease (CHD). Then we’ll see what the chromosomes say.” Of course, she was heartbroken and started to cry. Feeling miserable myself, I gave her a hug and told her, “Try not to worry, Carol. We’ll take care of everything he needs.”
Thankfully, an echocardiogram (heart ultrasound) performed later that day revealed no congenital heart defect. Two days later, the DNA analysis confirmed Andrew’s chromosomal abnormality as Trisomy 21. When I told Carol the news, she cried some more. As I sat with her, I still felt miserable. After his birth, Andrew lost too much weight and became jaundiced because of poor breastfeeding. Babies with Down syndrome are notoriously ineffective at nursing because of a weak suck and swallow, and poor tone in the muscles of their head and neck.
Carol was determined to breastfeed him and learned to use a silicone nipple shield to assist his poor latch. In addition, we used a feeding tube to supplement nursing with her expressed breastmilk. Carol was incredibly patient with him, and by ten days of age he learned to nurse well enough to gain weight and go home. Carol stayed home with Andrew for three months, and when she returned to work, she seemed optimistic. All the staff were relieved that she appeared to be taking his diagnosis in stride.
Not quite one month back from her maternity leave, the NICU nurse manager asked Carol to speak with a young couple who had just learned of their son’s unexpected diagnosis of Down syndrome. Carol hesitated at first, but then agreed to do this. Later she recounted to me that she planned to tell them what to expect medically, something she understood completely. Their child had a fifty percent chance of CHD and certainly would have some degree of intellectual and developmental delays.
She remembered that first encounter with those parents this way: “When we started talking, my nurse brain shut off and my mom brain came on. We talked about our dreams for our babies, what our goals were. It was a second child for both of us. We laughed and cried together and decided that we would raise our babies with Down syndrome the same way we did our first born - because that's what we knew how to do - and hope for the best.”
After that first parental meeting, Carol spoke individually with every new parent of a baby born with Down syndrome at our hospital, whether or not their baby needed NICU care. Carol took her new role as chief parental support caregiver to a whole new level, and all the staff grew accustomed to counting on her expertise. Whenever new parents were reeling with the unexpected diagnosis for their baby, she could comfort them like no one else. She spoke minimally about the medical stuff and much more about their hopes and aspirations for their new baby.
Carol made raising a child affected by Down syndrome look like a special gift. Some days, her son’s condition made her appear positive about her life. Other days she admitted, “Suze, it’s so hard.” When Andrew was one, she and her husband split up, and she remained a single mother to Andrew and his big sister for more than twenty years. Carol joined the Down Syndrome Association of Central Texas and ultimately became a board member for the association. At one point seven of the twelve association board members were parents she had met and talked with in the hospital. They served because they, too, wanted to raise awareness of Down syndrome and wanted all children with Down syndrome to have the same opportunities as any other child.
Throughout Andrew’s young life, Carol often entertained the NICU staff with updates of his progress and stories of his mischief. My favorite was his flushing her wallet down the toilet. He was a stubborn child, but happily attended school where his teachers told her they thought him to be articulate. In the NICU, we celebrated with her every milestone he mastered, and for many years he participated in the Special Olympics. Once he became a teenager, his favorite event was powerlifting.
Andrew graduated from high school, with a diploma, and now attends a program that provides job training and daily living skills, hoping to one day live semi-independently. He has a job at a local café, works out at the gym, hangs out with his friends, or sits around in boxers playing video games—all things typical of most twenty-year-old young men. He has really done well, quite a bit better than I expected, and undoubtedly his good outcome is due to having Carol as his mother.
A few years ago, I told Carol the story of how my son, David, was bullied in elementary school. When he skipped the fifth grade and was placed in a sixth-grade class, he was immature for his age. The other boys were in a clique lead by a rough-and-tumble skateboarder, and David ended up with very few friends in his new class. I told her about the class bully who was ruthless to David for several months, always mocking and ostracizing him. Carol and I were together in the NICU, leaning against either side of a radiant warming bed, chatting, while a sleeping preemie lay nestled in a blanket between us. I was patting the baby’s bottom while Carol prepared a tube feeding. It was then that I shared with her that the only child who would sit with David during lunch that year was a teenager named Richard. I gazed into her loving face and shared that Richard was a sweet-tempered fourteen-year-old boy with Down syndrome. The afternoon I told Carol my story of how Richard had befriended my son and touched our lives, we stood there gazing at each other, and tears welled up in my eyes. Tears rolled down her cheeks, and we stood there for some time looking at each other, smiling and crying.
Wednesday March 21, 2025 is World Down Syndrome Day
This essay is an excerpt from my book, “So Many Babies,” which you can get here.
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I have one of these extraordinary beings. I am so glad you were there to talk to Carol when Andrew was born. The neonatologist said “I’m sorry” like someone died. Another doctor told me not to expect much when I said I planned to breastfeed my son. He nursed for 10 months. I get doctors and nurses are so busy - especially in the NICU where I logged 60 days with my first and 21 with my second. But I also believe it is a place of miracles - just like you shared here. Thank you!
An amazing story! Thank you for sharing! Carol and her son were lucky to have each other. I always love taking care of babies with Trisomy 21. They are invariably the absolute sweetest.