On April 24, 2023, Laura and I left the house early to buzz up the coast for a quick breakfast before a very standard thirty week ultrasound. We picked up pastries at Girard Gourmet and walked down to La Jolla cove, ever a masterpiece of coastal beauty. The marine layer hung quietly in the air. Cormorants returned to newborn chicks with wriggling sardines in their beaks. They landed on nests that clung tightly to impossibly steep cliffs. Below them, sea lions put on an ever-evolving circus act that spilled from the land into the sea and back.
Life doesn’t get any better than this, I remember thinking. As we left, I asked Laura to stop so I could take a photo. She cradled her quickly growing baby bump and smiled.
As we sat in a cramped closet of an office with our sonogram tech, her intense focus on our baby’s heart caught my attention. These once-strange appointments had become familiar after three pregnancies. Something wasn’t right. I remember glancing at Laura. After hurrying out of the room and coming back, our tech’s face spoke more quickly than the string of confusing updates that followed.
Enlarged heart. Regurgitation. Back flow. Non-compaction. These terms flew across the ever-shrinking room as we struggled to make sense of what we were learning.
We left understanding that there was a serious concern for our daughter, and we were referred to a pediatric cardiologist. We were encouraged not to do research while we waited two excruciating days for our follow-up scan. I made Laura promise not to Google anything before we went to bed. I stayed up for hours relearning heart anatomy and reading about things like hypoplastic left heart syndrome, tricuspid atresia, and Ebstein anomaly. I remember quietly lying in bed, googling terms I didn’t understand and survival rates that seemed impossibly low with slow, hot tears rolling down my face wondering how we were going to make it.
Two days later, we drove to Mission Valley to meet with our pediatric cardiologist, Dr. Molkara. After a thorough rescan of our baby girl’s heart, Laura and I found ourselves in an awkwardly large room with blank walls, sitting in two chairs shoved in a corner. Dr. Molkara came in pulling a chair with her and sat down in the middle of the room. She quietly confirmed that there was significant dysfunction in our baby girl’s heart.
Our daughter was diagnosed with dilated cardiomyopathy, which includes a septal defect, moderate tricuspid valve regurgitation, at least one VSD, non-compaction, hypertrophy and an under-formed apex.
In plain English, her heart was enlarged, and both ventricles used for pumping blood through the body had decreased function. Instead of a quick, firm squeeze, there was a weak contraction. And part of the heart muscle that was normally smooth was thick and spongy. All in all, not good.
This was the first time we heard the phrase,
“We’re ten out of ten concerned. Your baby is unlikely to be compatible with life.”
We drove home and sat on the floor. We hugged our kids and started to make the first of many heartbreaking calls to our family and friends.
