Hand to Hold's Official Blog: Written by Parents for Parents

Learning Our Baby Had a Congenital Heart Defect

Heart Condition

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Like so many families, the 150 days we spent with babies in the hospital were a rollercoaster. But, if pressed on which day was the worst, one immediately comes to mind: the day I was told J had a congenital heart defect.

We were two months into his stay, far longer than I had mentally prepared myself, and even though we were so fortunate for his overall good health, I was counting the days until we could bring him home. My husband and I had just walked into our house from an hour-long commute from the hospital in rush hour traffic, and we were exhausted. I was dumping my bags onto the barstools in the kitchen when my cell phone rang.

Every NICU parent knows that feeling when you see that the hospital is calling you. We usually went weeks without a phone call from the hospital. My stomach fell somewhere around my feet, my hands started shaking, and I looked at the clock on the microwave to see the time. It was during the nursing shift change, which made the call even more surprising.

The cardiologist hurriedly introduced herself on the phone, and her accent was so thick that I struggled to understand what she was saying. Something about a congenital heart defect, pulmonary stenosis, but was vague on how long J had had the condition, the severity, or the treatment for it.

I was crushed. Absolutely crushed. I had believed J had passed the traditional heart follow-ups necessary for preemies, and I had no idea J’s heart murmur was anything more serious than the closing of his PDA, a regular part of having a preemie.

That night, I googled “pulmonary stenosis” to learn what caused the condition, something neither my husband nor I could extricate from our phone conversations with the doctor. We learned that the condition likely had nothing to do with his prematurity; he had probably developed it at around 8 weeks gestation. The narrowing of the pulmonary artery caused blood to flow through his heart in an abnormal way, and the resulting pressure could be heard in the form of a heart murmur, which is the symptom that had caused the NICU to request the follow-up with the cardiologist.

My gut reaction was that I was a failure, all over again. I had been waiting for the other shoe to drop since J’s birth at 26 weeks. I was living in a steady state of barely controlled terror. Was this diagnosis just what I had been fearing? I had no idea what it would mean for J’s long-term health, and I was clinging to the hope that each setback he had faced so far was a temporary one, not lifelong.

The initial pediatric cardiologist was clinical and cold with very little sympathy for what delivering an unexpected diagnosis of a heart defect might mean for the parents of a preemie. We were bracing ourselves for the worst, but, strangely, a diagnosis completely separate from all of our daily concerns was devastating. It takes a phenomenal amount of courage to get up and face whatever news might come from the NICU each day, and I had little emotional energy left to deal with a surprise heart condition.

But, we arrived the next day at the NICU, as we always did, and we requested to see the other pediatric cardiologist and to talk to one of J’s doctors who assured us that he had a good chance at living a very normal life. No one could promise us anything, as everything is tenuous in the NICU, but J’s prognosis was very good.

Sometimes, life’s journey is circular. J is named for his great-grandfather, who died at the age of 95 when J was six months old. They were never able to meet. His great-grandfather, a star athlete recruited to play professional basketball, was unable to serve combat missions during World War II because of a heart murmur that never impacted his health at all. We will never know the cause of the heart murmur now that we have lost Granddaddy, but I can’t help but wonder. I hope that the heart murmurs are related and that J’s heart will also give him 95 good years.

Summer Hill-Vinson About Summer Hill-Vinson

Summer (MS) delivered her son 14 weeks early in July 2010 as a result of preterm labor, and he was in the NICU for 3 months. She unexpectedly developed severe preeclampsia with her daughter, almost had her in another state while on vacation, and delivered her 11 weeks premature in January 2013. Both babies weighed 2.5 pounds, and they were in the same NICU for a combined 150 days. Summer, a journalism instructor, is writing a book about her family's NICU years.

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