Congenital Heart Defect Awareness Week: Diagnosis Day
In honor of CHD (congenital heart defect) Awareness Week, we asked a Charlottesville heart warrior's family to share their story of Diagnosis Day with us. They graciously agreed and we are so grateful.
Like many heart moms, my life is divided in two parts: before diagnosis day and after.
On April 3, 2023 we went in for our 20-week anatomy scan. Weirdly, I wasn’t nervous. Not even when the tech hovered over his heart, left the room to take a break, and returned to get more pictures. Our ultrasound was in a different building from where our doctor was, so our post-scan consult was a video call on an iPad.
"Your son is growing beautifully. But there is something gravely wrong with his heart.”
It was like a thick, black curtain swooped down over my head and lingered just a moment too long. When it lifted, I was shaking, crying, sweating, and breathing too fast. “Is he going to die?” I remember asking. “I don’t know, but I am very worried.”
I asked for a diagnosis. He said he wasn’t the best person to offer one, but if he had to guess: “hypoplastic left heart.” I can’t recall the rest of the conversation. But it’s clear that before talking to us, Dr. Dudley had already called Dr. Schneider, who is now our pediatric cardiologist. Within an hour of leaving, cardiology called and booked us for a fetal echo the following morning. They even apologized it couldn’t happen the same day— that’s how I knew we were in seriously bad territory.
The 16 hours between appointments were long and isolating. My husband and I decided not to tell anyone until we had an exact diagnosis; we didn’t want our families to worry or to have to hold on to this sadness any longer than necessary. That afternoon, I walked by the river, got a coffee, wrote in my journal, tried to become religious again and pray, pray, pray. I googled Hypoplastic left heart, thinking that would be the worst case scenario. Three open heart surgeries that wouldn’t even cure him. I begged and prayed for a milder diagnosis. I didn’t sleep.
Our echo the next morning was miserable. Silent. Crying on the exam table with nothing to say. Staring at moving pictures of my son’s heart. It looked like a tornado on the weather channel; swirls of too much color.
From the dark ultrasound room we were ushered into a consult room by our cardiology care coordinator. She brought us water. Dr. Schneider came in and sat down somberly.
“Your baby is very sick.”
In that moment he hung his head, grabbed my shoulder, and gripped me tight as I began to sob. I’ll never forget that. It was a bad day for him, too.
Dr. Schneider took out a piece of paper with a diagram of a healthy heart. Then he marked it up to show us what our baby’s heart looked like.
“Ok, but what is it called?” I asked repeatedly. And, the doctor didn’t know. He said he had never seen anything like it.
The diagnosis itself wasn’t all that important anyway. Our son’s heart also had fluid around it. That, plus his extremely hypertrophied right ventricle, led Dr. Schneider (and later, Dr. Dean) to believe our son’s heart disease was progressive. Meaning, his heart could get worse as he grew in my womb. Meaning he could die before birth. And if he didn’t die before birth, there were no guarantees for successful resuscitation. If he was born alive and resuscitated, there were no guarantees he’d be a candidate for lifesaving surgery or transplant.
"I just want to hold him"
I remember saying over and over and over again on diagnosis day.
Miraculously, I did. And still do.