For Rebecca and her family, the news that their unborn baby, Charlie, had a congenital heart defect, would change their lives in ways they could never have anticipated. At 24 weeks of pregnancy, during a routine 20-week scan, the sonographer noticed something unusual: Charlie’s pulmonary artery was quite narrow. Concerned, the sonographer immediately referred Rebecca for a fetal cardiology evaluation. It was then that they learned their baby had Tetralogy of Fallot (ToF), a serious congenital heart defect that involves four heart defects, including a narrowed pulmonary artery and a hole in the heart.
The diagnosis came as a shock. Charlie was Rebecca’s third child, and her previous pregnancies had been uncomplicated. The news was overwhelming. As a mother, Rebecca couldn’t help but feel the weight of the unknown, unsure of what to expect in the months ahead. But in retrospect, she is deeply grateful for the early detection, which allowed her family to prepare for the challenges to come.
The diagnosis meant that Charlie would require immediate medical intervention following birth, and Rebecca’s delivery was meticulously planned. The medical professionals were well-prepared for Charlie’s arrival, ensuring that the birth went smoothly. After a brief period in the NICU, Charlie was discharged and brought home, but the journey was far from over.
At just five weeks old, Charlie began experiencing Tet spells, a common symptom of ToF. These episodes caused his oxygen levels to drop and his heart rate to accelerate. The sight of her baby struggling with these symptoms was terrifying for Rebecca. “It was frightening, but because we knew about Charlie’s diagnosis, we were able to anticipate this and had all the necessary support on hand,” she says. Despite the fear, Rebecca and her family were able to manage these episodes with the support of their medical team.
However, it became evident that Charlie would need more intervention. Being from Northern Ireland, the family had to travel to Dublin, Ireland, for any cardiac treatments. In August 2025, Charlie made his first trip to Dublin, but at that time, he wasn’t yet ready for the full heart repair surgery. Instead, he underwent an RVOT balloon procedure, a procedure designed to open his narrowed pulmonary artery. The procedure was successful, and Charlie recovered well. But his journey wasn’t over, and the family knew that more medical intervention was inevitable.
Charlie’s condition continued to present challenges. He began experiencing distress while feeding, and his severe reflux led to multiple hospital admissions. To ensure that Charlie received the proper nutrition, he was fed through an NG tube, a feeding tube inserted through his nose. Despite these setbacks, Charlie continued to gain weight, a sign that he was slowly but steadily progressing. At just four months old, Charlie returned to Dublin for his full repair surgery, which took place in November 2025.
The surgery was a success, and Charlie began his long road to recovery. For Rebecca, the journey had been exhausting and filled with anxiety, but she found comfort and support in the stories of other heart families. “I came across Tiny Tickers while I was pregnant, and hearing other families’ stories gave me so much courage, hope, and strength,” she says. The Tiny Tickers community provided Rebecca with invaluable emotional support and reassurance during the most challenging time of her life.
Reflecting on her experience, Rebecca is filled with gratitude. While the journey has been difficult, she is deeply thankful for the sonographer who detected the abnormality in Charlie’s heart at just 20 weeks of pregnancy. That early action, Rebecca believes, made all the difference. It allowed the family to be proactive in their approach to Charlie’s care and ensured that they were in the best possible position to support their baby. “If it hadn’t been for that early detection, we wouldn’t be in the position we are today,” Rebecca reflects.
The family’s experience has been a testament to the power of early diagnosis, medical intervention, and the unwavering support of healthcare professionals and families. As they move forward with Charlie’s recovery, Rebecca remains optimistic. “Charlie is doing well now, and we are just so grateful for everything that has been done for him,” she says.
Charlie’s story is one of resilience and strength, a reminder of the incredible progress that can be made when families, healthcare professionals, and communities work together. It is a story that speaks to the power of hope and the importance of early intervention. Charlie’s heart may have faced challenges, but his family’s love and determination have carried him through, and he continues to thrive.
For Rebecca, the most difficult part of the journey is behind them, but she knows that the road ahead may still have its challenges. However, with each passing day, Charlie’s progress brings her closer to the day when she can watch her son grow and live a full, happy life. Through it all, the love and support of her family, healthcare team, and heart community have been a source of strength, and she is forever grateful for that.
Charlie’s journey is far from over, but the love and courage that have defined his path so far continue to inspire everyone who has followed his story. He is a fighter, and with the unwavering support of his family and medical team, there’s no doubt that he will continue to conquer whatever comes next.
