One Moment Changes Everything

Nine years ago last month we learned that we were having a little boy. I remember the ultrasound technician being so quick, talking me through every step of the anatomy scan. "Now I'm measuring the femur..(click, spin, click click)..now I'm looking at the belly (click, click, spin, click)...and now we're looking at the ventricles in the brain...(click, spin,



click)...and now we'll check his heart............

.........

........

hm......

...


Mom, can you roll towards me? ...."

.....

Long moments ticked away, I could hear the second hand on the clock moving.


Time slowed down.


As practiced as she was at hiding her reactions, micro expressions of concern crowded the area between her brows. The corners of her lips twitched downwards.


Joe, sensing something had changed, looked up from whatever he had been doing on his phone, looked at me, and at her, and back to me, raised his eyebrows, I shook my head and shrugged, but my eyes were scared, I could feel it and so could he. He turned off the screen and laid the phone in his lap, sat up straighter and crossed his arms.


She asked me to roll the other way. No clicks, no spinning the magic ball tool on the ultrasound machine, she kept wrestling with the expression of deep concern and trying to show me her pretty smile instead. She had the same name as my daughter, but spelled differently. Funny what details stick with you. She was wearing bright pink scrubs as she explained that "sometimes babies just don't cooperate" and she was going to call in her colleague who had done this for 20 years, the "baby whisperer."


Then she stepped out.


In the silence of the dark room, I looked at Joe. "Something about the heart?" He asked. Tears rolled down my face and I started to shake. I nodded but couldn't speak. This wasn't my first rodeo, I had seen hearts on ultrasounds before. I knew she hadn't seen all four chambers, I knew some of the long list of things they try to rule out - some. I tried to calm the sob rising in my chest. I’d like to say my husband stood up and came to my side, held my had and told me it would be alright, but that’s now how this went down. He sat there, staring at the floor, eyes darting between two tile squares, exhaling loudly out of his nose. He had been worried about something going wrong, he always was, with each of our kids, but even with his worry, I don’t think his heart had ever considered it a possibility. The clock on the wall, hard wired to keep time through even the hardest of moments, ticked loudly in the small room.


The door opened.


The baby whisperer came in smiling the same strained smile, eyebrows refusing to keep mum. She also failed to find a view to see all four chambers of the heart. She told us what she thought it was, a potential diagnosis. We left with an appointment for early the next day at maternal fetal medicine. They told us it was something else, "most likely," a different diagnosis altogether, and gave us an appointment for a fetal echocardiogram with the experts, some practice we had never heard of, and a pamphlet on congenital heart defects from the American Heart Association. We both googled and read up on the two diagnoses they had given. We mentioned to close friends and family what was going on. It was the last week of summer vacation for the older kids. We tried to pretend we had nothing to worry about. We were not successful.


A week later, sitting in a softly lit room with couches and end tables, shepherded by an RN who was a complex cardiac case manager, I heard the words “hypoplastic left heart syndrome” for the first time out loud. Although she turned out to be a wonderful person, a wonderful doctor, and a fierce advocate for my son, I will never forget how much I hated the cardiologist who told us about HLHS and the uncertain future of our little boy. I felt like I was falling down a well, the room stretched out and suddenly, her voice seemed to come from very far away, like she was shouting into a tube. All I could think was, "that's at the very end of the book. Oh God, it's the last one in the book!" I knew enough to understand that the pamphlet started with minor heart issues, like murmurs, and marched through to the more complex, most fatal defects. HLHS was the granddaddy, the big boss, it sat at the end of the book, guarding the gates of sanity, like the deadliest villain from some video game, the hardest one to beat.

...

but he has! So far, Sullivan is winning.


Sullivan has survived three open heart surgeries, 4 cardiac catheterizations, and seven older siblings.

I would do anything to prevent him from having to endure what he has. I know our lives would be different without him -- and lesser -- he creates joy and laughter. Sullivan was meant to be.


Nine years ago, one moment changed everything. What a journey it continues to be.

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