Story
On 18 July 2025, we welcomed our fourth child, Nina. From the moment she arrived, we were in love and thrilled to bring her home after her routine newborn checks. Those first days were precious, introducing her to her older siblings and settling into life as a family of six.
On day five, I noticed Nina’s breathing had changed—faster and heavier than normal, reaching 80–90 breaths per minute. As a precaution, she was admitted to hospital for observation. An advanced nurse examined her and detected a loud heart murmur, reassuring us at first that it was likely harmless. By chance, a consultant cardiologist was available that evening and performed an echocardiogram. It was then that our worst fear was confirmed: Nina had been born with Congenital Heart Disease (CHD).
Nina was diagnosed with a large Ventricular Septal Defect (VSD)—a hole between the lower chambers of the heart that causes oxygen‑rich blood to flow backwards, forcing the heart and lungs to work harder. While small holes sometimes close naturally, larger ones often require surgery. The cardiologist explained that Nina’s defect was large and positioned in a way that would likely need open‑heart surgery. It was unusual to detect symptoms so early, as most babies with a large VSD show signs only after several weeks.
The days that followed were overwhelming. We educated ourselves on CHD, learned what symptoms to watch for, and prepared questions for her next review. For nearly six weeks, we slept in shifts, monitoring her breathing through the night. Any small change sent us back to the hospital, where Nina had open access because of her condition.
Although this journey has been incredibly difficult, seeing how well Nina is doing at seven months old has brought us hope. We still take each day as it comes, but we now feel more confident that she may avoid surgery altogether. We are deeply grateful to every healthcare professional who has supported us.
What is CHD?
❤️ CHD stands for Congenital Heart Disease
❤️ CHD involves structural problems with the heart.
❤️ There are over 30 types of defects
❤️ Around 1 in 100 babies in the UK are born with CHD with over 6,000 diagnosed each year.
❤️ CHD is the leading cause of deaths from birth defects
The British Heart Foundation (BHF) provides extensive information on heart conditions, risk factors, symptoms, support groups, healthy living, events, podcasts, and more. February’s Heart Month is especially meaningful for heart families—a time to honour loved ones, raise awareness, and advocate for research. This year, our family is asking for donations to the British Heart Foundation.