On February 10, 2014, what was supposed to be a routine prenatal check-up turned into a life-altering moment. Instead of learning whether I would be welcoming a daughter in frilly pink or a son in tiny bow ties, I received devastating news: My baby had only half a heart.
She was diagnosed with Hypoplastic Right Heart Syndrome (HRHS), a severe congenital heart defect that affects the heart’s right side, severely restricting blood flow.
The news was like a punch to the gut. At first, I was advised not to continue the pregnancy. My world crumbled, and I found myself overwhelmed with shock, fear, and disbelief. After days filled with endless tears, research, and seeking second opinions, my husband and I found hope in the form of an extraordinary team of doctors at Boston Children’s Hospital. The path ahead was still daunting, but it became clear: We would continue the journey, fight for our baby, and surround her with all the love and strength we could muster.
Our daughter, Elliot Grace, entered the world on June 24, 2014, kicking and screaming. I only had five beautiful minutes with her before she was rushed to the Cardiac ICU. My heart ached as I was wheeled to another hospital to meet my baby, unable to hear her cries while other mothers in the room had their babies in their arms. She was immediately placed on life support, and her fight for life began.
Elliot’s first open-heart surgery, the Stage 1 Norwood procedure, took place when she was just three days old. The second, the Stage 2 Glenn procedure, happened at five months, and her third, the Stage 3 Fontan procedure, took place when she was two years old. Despite all the hurdles, she defied the odds with a strength and resilience that continues to inspire everyone she meets.
However, CHD doesn’t end with surgery. Elliot’s heart is powered by a single ventricle, and she requires daily heart medication. She struggles with ADHD and faces regular cardiac and liver testing. There’s still uncertainty about her future, as complications like Fontan-associated liver disease (FALD) could require a heart and liver transplant.
The scariest part is not knowing when or what will come next.
But here’s what I do know: CHD research is why Elliot is alive. It’s why I fight every day.
Over the years, I’ve turned my fear into action. I founded the New England Region of the Children’s Heart Foundation and serve on its National Board of Directors. To raise funds for CHD research, I even climbed Mount Kilimanjaro—because fighting for Elliot’s future means doing whatever it takes. And now, I’m proud to run the 2025 NYC Marathon for the very organization that’s fueled the progress Elliot has experienced—and continues to provide hope for families like mine.
Elliot’s passion for the cause is just as fierce. She hosts an annual birthday blood drive, runs a lemonade stand, and has even created her own wine label at our family’s winery, Saving Grace, named in her honor. We donate $2 from every bottle sold to CHD research.
So, why am I running the marathon? Because I can’t fix her heart, but I can fight for her future. I’m running in honor of Elliot and every child born with a congenital heart defect. I’m running to raise money for life-saving research that has already made miracles possible—and will continue to shape the future for these incredible children.
Elliot is now ten years old. She’s thriving—sassy, sweet, strong, and full of life. Every day, she reminds me what real courage looks like. She is my superhero, and I’m proud to run every mile for her.
Congenital heart defects (CHDs) are the most common birth defect in the U.S., affecting 1 in 100 babies. Yet, they remain underfunded, under-researched, and too often misunderstood. This needs to change.
Every mile I run, every dollar we raise, brings us closer to better outcomes, brighter futures, and the chance for these incredible kids to not only grow up—but to grow old. With your help, we can get there.
With love and endless gratitude,
Melissa & Elliot (and Dashiell and Monroe too!)