On February 10, 2014, I walked into my routine prenatal appointment expecting the same joy every mother anticipates — a flutter on the screen, a healthy heartbeat, maybe even the moment we would finally learn our baby’s gender. Instead, I sat on the exam table frozen, listening to words that cracked my world open:
“Your baby has only half a heart.”
Hypoplastic Right Heart Syndrome.
A diagnosis so severe the doctor immediately advised termination.
I remember staring at the wall behind him, because looking directly at him felt too painful. My mind buzzed with disbelief. My body felt numb. I was carrying a child who, according to medical charts, wasn’t supposed to survive.
I went home and sobbed until there were no tears left. For days, I lay awake in the dark, one hand on my belly, mourning a future I thought was slipping away. How do you grieve a child who is still alive inside you? How do you make a decision no mother should ever face?
But grief slowly shifted into determination. After endless hours of research, phone calls, and pleas for help, we found a glimmer of hope — Boston Children’s Hospital, a place where some of the world’s most complex congenital heart defects are treated.
And in that moment, the fog lifted.
We would not give up.
We would fight for our daughter.
A Warrior From Her First Breath
On June 24, 2014, Elliot Grace entered the world screaming — a tiny, fierce sound that told us she wasn’t going anywhere. I held her for just five precious minutes before she was whisked away to the Cardiac ICU and placed on life support. Those moments, short as they were, are burned into my soul. Her skin on mine. Her heartbeat against my chest. A connection deeper than any fear.
At three days old, she had her first open-heart surgery.
At five months, her second.
At two years old, her third.
Each surgery felt like handing my child over to a battlefield she should never have been asked to fight on. Each time, I kissed her forehead wondering if it might be the last time I felt its warmth.
But every time, Elliot came back to me. Smaller. Weaker. Scarred. But alive — and determined.
The Lifelong Reality of CHD
People often believe heart surgery “fixes” congenital heart disease. I wish that were true. But Elliot lives with a
single ventricle, meaning half a heart must do the work of a whole one.
She takes medication every day.
She undergoes constant cardiac and liver testing.
She battles ADHD.
She lives with the possibility — one we try not to say out loud — that she may someday need a heart and liver transplant.
The fear never fully leaves. It softens, but it never disappears. Every fever, every cough, every moment she seems “off” sends alarms through my body. That’s the reality of raising a CHD child: love and fear braided together, always.
Why I Fight
There is one truth I cling to:
CHD research is the reason my daughter is alive.
Behind every surgery, every innovation, every life saved — there are years of research, clinical trials, dedicated scientists, and volunteers who refuse to accept defeat.
That is why I fight.
It’s why I founded the New England Region of the Children’s Heart Foundation.
It’s why I serve on the National Board.
It’s why I climbed
Mount Kilimanjaro — carrying her name in my heart with every step.
It’s why I will run the 2025 NYC Marathon, even if I cross the finish line on trembling legs.
I fight because she fights.
A Little Girl With a Giant Purpose
Elliot doesn’t just live with CHD — she rises above it. She hosts blood drives. She runs lemonade stands. She even has her own wine label at our family’s winery,
Saving Grace, directing proceeds toward CHD research.
At ten years old, she is bold, funny, radiant, and strong in ways I could never have imagined when I first heard her diagnosis. When I see her running through the vineyard, hair wild in the wind, laughing like her heart holds the whole world, I am reminded:
This child was never meant to be a statistic.
She was meant to be a miracle.
A Call to Hope
CHDs affect 1 in 100 babies — yet they remain critically underfunded, misunderstood, and often overlooked. So many families walk the same uncertain road we walk. So many children fight the same silent battles Elliot fights every day.
We can change that — together.
With every mile.
Every donation.
Every prayer.
Every raised voice.
I cannot fix her heart.
But I can fight for her future.
And I will — for as long as I live.
💛 Please keep Elliot, and every CHD warrior, in your prayers as we continue this fight — one heartbeat, one miracle, one step at a time.