In February 2020, we welcomed our son, Charlie, into the world after a long wait—15 days overdue. His birth, despite being slightly delayed, was relatively smooth, and we were filled with joy as we held our healthy, 7lb 2oz baby boy. Charlie’s first few days seemed like a dream, and as first-time parents, we couldn’t wait to begin our journey together.
However, something felt off from the start. Although Charlie seemed to be doing well, I began to notice subtle signs that made me uneasy. He struggled to breastfeed and never seemed interested in drinking milk. We switched to formula, but even then, Charlie refused to drink the amount he should have. I mentioned these concerns to our health visitors, but we were always reassured that everything was fine.
As time passed, Charlie’s weight was a constant worry. He wasn’t gaining as expected, and I noticed that he seemed to sweat excessively during feeds. I thought it was just a phase, but as a mother, I couldn’t shake the feeling that something wasn’t right.
When Charlie was six months old, we started weaning him onto solids, but his feeding issues persisted. By the time he was seven months, he still hadn’t gained enough weight, and after a weigh-in, it was clear that he had dropped on the growth charts. Our health visitor suggested we try giving him extra calories, but despite these efforts, his weight continued to decline.
As Charlie approached his first birthday, we were sent to the GP after repeated concerns. At this point, Charlie was starting nursery, but his health seemed to worsen. He began catching viruses constantly, leading to frequent coughing and high temperatures. Each time, we took him for a COVID test, but it felt like we were just chasing symptoms without ever getting answers.
Then, one day, after Charlie vomited following a meal, we realized something had to be wrong. I took him to the GP, and after multiple visits and many unanswered questions, we were finally referred to a paediatrician. I remember that moment so clearly—I had been worried about Charlie since the day he was born, but finally, after 17 months of uncertainty, I had someone listening to me. The paediatrician immediately noticed Charlie’s lack of energy, his breathlessness, and his inability to walk—things that seemed so normal for most children his age but were glaring signs of an underlying issue. The doctor listened to his heart, and immediately she heard a murmur. We were referred for urgent tests.
The next few days felt like an eternity. We went for an ECG and a chest X-ray, and just as we were leaving the hospital, the doctor called. She wanted us to bring Charlie to a different hospital for an urgent ECHO (an ultrasound of the heart). At this point, we tried to stay hopeful, but deep down, we knew something was terribly wrong.
When we arrived at the second hospital, we were told to wait. I remember the moment the doctor came back. The look on her face said everything. I could feel my heart shatter as she told us that Charlie had
complete atrioventricular septal defect (AVSD) and would need open-heart surgery as soon as possible. I was numb, overwhelmed with questions: Why had this been missed? Why didn’t we know sooner? How had our baby been suffering without us knowing?
The diagnosis was a devastating blow. AVSD is a rare and serious congenital heart defect that affects the valves and septa in the heart. For months, Charlie’s heart had been failing, and I had no idea. He had suffered in silence, and it was a miracle that we had caught it in time.
Charlie was started on medication for heart failure right away. We spent the next few weeks in the hospital, anxiously awaiting surgery. The fear of losing my child was overwhelming, but with each passing day, I watched my baby fight. On the morning of the surgery, I handed him over to the surgeon with a broken heart, knowing that they would stop his tiny heart to repair it. It was the hardest thing I’ve ever done, and the waiting felt like an eternity.
The surgery lasted several hours, and when we finally received the call that Charlie had made it through, it was a moment of pure relief. The surgeon was optimistic, but warned us that Charlie’s recovery might take time. However, true to his nature, Charlie proved to be a fighter. He was off the ventilator the next day and began his recovery far faster than anyone expected. Five days later, we were allowed to take him home.
Now, Charlie is a lively, energetic little boy who loves to run around and play. He has a large scar from the surgery, but we call it his “superhero scar” because it’s a reminder of his strength and resilience. He still requires long-term medication and regular check-ups, but each day is a gift.
Looking back, I can’t help but feel a mix of gratitude and heartbreak. If Charlie’s heart condition had been diagnosed earlier, he wouldn’t have had to suffer so much. The months of struggling with his feeding, the constant illnesses, and the missed diagnoses could have been avoided if we had known what to look for. I often think about the impact early detection could have had on his journey.
That’s why I am so passionate about the work that Tiny Tickers is doing. Their mission to train sonographers to detect congenital heart defects in utero is life-saving. The earlier a heart condition is caught, the better the chance of recovery and a healthy life. Tiny Tickers is changing the lives of families like ours by raising awareness about heart disease and ensuring that every baby gets the best possible start.
As I watch Charlie grow and thrive, I am filled with an overwhelming sense of gratitude for the doctors, nurses, and surgeons who saved his life. I am also eternally grateful to the families who share their stories, as their experiences have helped us heal and gave us hope during the darkest times.
We may not have known about Charlie’s heart condition at birth, but we were fortunate to catch it when we did. Our journey has been long, but it’s one that I wouldn’t change for the world. It’s a journey that has taught me the importance of trusting my instincts, advocating for my child, and never giving up. Charlie’s heart is stronger than ever, and so are we.
