My Journey with Congenital Heart Disease & Defect (CHD)

I was diagnosed with Congenital Heart Disease (CHD) as a baby, a condition that is part of my diagnosis of Noonan Syndrome (NS). Being so young at the time, I don’t have any memories of the early stages. However, I do know that in 1994, I underwent my first open-heart surgery to close a Ventricular Septal Defect (VSD) and address Pulmonary Stenosis. This surgery took place at what was then Guy’s Hospital in London.

For my parents, this surgery was an incredibly difficult experience. The uncertainty was overwhelming, especially considering that I was a premature baby, and we were far from home and our support network.

In 1994, medical care was not as advanced as it is today. While I’ve heard some stories over the years about how difficult it was, there were also other challenges, including struggles with bronchiolitis and breathing issues after I left the hospital. I vividly remember sitting with my dad on the train ride home, and, as I took a deep breath, I stopped breathing. After some assistance, I regained consciousness. That moment has stayed with me.

Growing up, I had annual check-ups at my local hospital, where Dr. Bamford was my primary doctor. Every four years, Dr. Rosenstiel would travel from Guy’s Hospital to conduct a day clinic, where I would always be part of the consultation.

At the age of around 15, my care was transferred from Ipswich to the Royal Brompton Hospital in London. The specialists there had more expertise in dealing with conditions like mine. For many years, my heart remained stable following my initial surgery, although I continued to experience breathlessness, chest pains, and fatigue.

At 25, during a routine check-up, I was informed that I had a mild leak in my Mitral Valve. The doctors told me that I would need surgery at some point in the future, though it wouldn’t be necessary for many years. However, when I returned a year later, I was told the leak had progressed to a moderate level and further testing was needed to assess how my heart was coping. This led to a Trans-oesophageal Echocardiogram (TOE), which provided more details on the condition of my heart.

After a family fishing trip a few months later, I received a call from the hospital with the unexpected and heartbreaking news that surgery was now necessary. Just like that, the surgery was scheduled for Friday, 13th September 2019.

The surgery went well, and after just six days in the hospital, I was able to return home. The pain was well-managed, but I was laid up for several weeks during my recovery. I was unable to return to work for three months, and when I did return, it was on light duties until the new year. The recovery process was slow, but I gradually regained my strength.

Since this surgery I have had a few check ups in London, with my most recent assessment in March 2025 revealed that the pulmonary valve, previously operated on, now exhibits a moderate leak. My medical team has advised that while this condition will eventually require surgical intervention, it is not deemed urgent at this time. The next steps will be carefully monitored and planned according to the progression of the valve’s condition to ensure timely and effective treatment.