February is Heart Month: The Journey That Made Us a Heart Family
Did you know that 1 in 100 babies is born with a congenital heart defect? Or that 120-150 infants under one year old receive a heart transplant each year? I didn’t—until I had to. Until it became our reality.
Our journey as a heart family began on October 20, 2023, when our beautiful Francesca “Frankie” Charlene was born. At 9 lbs 3 oz, she was strong, healthy, and perfect in every way. We brought her home, and her big sister Vinnie fell instantly in love. Those first few days were full of newborn snuggles and sweet moments, but on October 26th, everything changed.
Frankie suddenly lost interest in nursing, became lethargic, and vomited. By the next morning, her tiny body was mottled, her temperature was dangerously low, and her heart rate was erratic. Our pediatrician took one look at her and said the words no parent wants to hear: “She is very sick. You need to get to the children’s hospital—now.”
I rode in the ambulance, holding oxygen over her tiny face, praying she would stay with me. The ER was chaos—doctors and nurses calling out orders, pushing medications, working to stabilize her. Her blood had turned acidic from lack of oxygen, and her body was shutting down. After two hours, It was decided (and confirmed after biopsy) she went into heart failure due to Viral Myocarditis onset by Rhino/Enterovirus with secondary dilated cardiomyopathy due to her heart being so inflamed.
That night, our worst fear became reality. Frankie coded—twice. Her tiny heart couldn’t keep up, and we stood helplessly in the corner, watching as doctors and nurses fought to save her life. By some miracle, she came back on her own, without intervention. On October 28th, she underwent emergency heart surgery to place pacing wires, an attempt to help her failing heart. Then, a new complication—her tiny leg turned dark purple, her toes black. A blood clot. We prepared ourselves for the possibility that she might lose her foot, her toes, maybe even her whole leg. But babies are resilient, and over time, her body fought back.
For weeks, we clung to every glimmer of hope. One morning, her heart unexpectedly started beating in sync on its own. Could this be the sign we had been waiting for? Maybe she wouldn’t need a transplant after all. But our relief was short-lived. When they tried to remove her breathing tube, her heart couldn’t handle the strain. It was clear—she needed more help. The conversations turned to LVADs and transplant lists.
On November 22nd, the day before Thanksgiving, Frankie underwent open-heart surgery to receive a Berlin Heart, a mechanical pump that would take over her heart’s job while we waited for a new one. Her chest was left open at first, her swollen heart too fragile to close until Thanksgiving Day. We sat by her bedside, watching, waiting, hoping. Each day, doctors adjusted settings, trying to find the right balance. The Berlin Heart kept her alive, but it was never meant to be permanent.
On December 2nd, at 10:21 AM, Frankie was officially listed as Status 1A for a heart transplant. We settled into a new routine, finding joy in small victories—holding her, feeding her, dressing her in tiny hospital onesies. She thrived developmentally despite the tubes and wires. She learned to roll over (to our terror!), loved to babble and sing, and gifted us with the most infectious smile.
Then, after 180 days on the Berlin Heart and 170 days listed for transplant, we got the call. The call that would save her life.
On May 20, 2024, Frankie received her Hero Heart.
In the midst of their deepest grief, a family said “yes” to organ donation. Their selfless decision gave Frankie a second chance. We carry their child’s legacy with us every single day, honoring the gift they gave us.
The past eight months have been a whirlwind of appointments, heart biopsies, catheterizations, and hospital stays. There have been setbacks and scares, but through it all, Frankie continues to amaze us. She is strong. She is resilient. She is here. And for that, we are endlessly grateful.
This Heart Month, we honor not only Frankie’s fight but the fight of every heart warrior. We honor those who have battled CHD and still fight today, and those who have gained their angel wings – all of our warriors whose stories continue to inspire and remind us why awareness, research, and organ donation are so important. We remember the angels who have given the greatest gift, and we will never stop sharing their legacies.
Because of one family’s “yes,” our daughter is alive today. And we will never stop telling her story.
Read more about Frankie’s story while she was in the Cincinnati Children’s Hospital.
