Cece's Journey: Heart of a Fighter

When we started this journey with our daughter, Cece, we made a promise—to share it openly, no matter how hard it got. We wanted others to understand what congenital heart defects (CHDs) truly mean for families like ours—the fear, the fight, the unexpected turns, and the relentless love that keeps us going.

Cece was born five months ago, four weeks early, and with a serious congenital heart condition: Tetralogy of Fallot with pulmonary stenosis and double outlet right ventricle (DORV). At just two weeks old, she underwent open heart surgery to repair a large hole in her heart. We thought we had time to breathe after that—time to let her grow, to recover. But as any CHD family knows, nothing is ever simple or predictable.

Cece has faced obstacle after obstacle—feeding issues due to aspiration, frequent coughing, and ultimately requiring a surgically placed GJ tube for continuous feeding. Through it all, she remained our bright, beautiful, determined little girl. We’ve lived each day managing her medical care, navigating hospital visits, and adjusting to a new, complicated normal.

But nothing could have prepared us for what happened on May 1st.

As we were getting Cece ready for bed, she became blue and unresponsive. In an instant, our world stopped. Without hesitation Brian began CPR while we waited for help. EMS arrived and continued CPR and they were able to revive her.

Cece was medflighted to Boston Children’s Hospital, where she was placed in the ICU. She is stable, and we are endlessly grateful—but we are facing what feels like another impossible chapter. Cece will need a second open heart surgery, likely in the days or weeks to come.

No parent should ever have to perform CPR on their child. No parent should ever have to watch a medflight carry their baby away. The grief, the fear, the helplessness—we are still sitting in it. But we are also holding onto hope, because Cece is still here. Because Brian knew CPR. Because of emergency response workers. Because we’ve had the support of an incredible medical team and community.

Today, we are asking for your help. The emotional toll is immense, and so is the financial burden. Time off work, travel to and from Boston, medical expenses not covered by insurance—it adds up fast. But more than anything, we want to be fully present for Cece, without added fear about how we’ll stay afloat.

If you’re able to give, please know it will go directly to supporting our family through this unthinkable time. And if you’re not in a place to give, we ask that you share Cece’s story, or simply hold us in your heart.

Cece is fighting. And we are fighting for her.

With gratitude and hope,

Tracey, Brian & Cece