Over 7 million people in the UK are living with heart or circulatory disease: This is my story:

I was born ten days early in September 1987, at Preston hospital. There were no issues during my mum’s labour. However, shortly after my birth it became apparent that something wasn’t right. I didn’t cry like all the other babies and even though I was pink at birth one of the nurses noticed I was turning blue. At first they thought I was just cold from the open window, but soon doctors and paediatricians came down and moved me to special care.

Doctors managed to stabilise me but were unsure as to what further action to take because my condition was so complex. I finally went home with my parents a few weeks later; however my parents were still unsure about my life expectancy as were the medical team. They hastily had me christened.

At ten months old I had a BT Shunt which was a precursor for the Fontan procedure. After my shunt I was diagnosed with a series of complex congenital heart defects. My condition was so complicated and unusual that there is no concrete term to define it.

One day, mum was changing my nappy and saw it was bright red – I had passed pure blood. She called the G.P, who arrived and said it must be Ribena that she had spilt. My mum insisted  something was wrong, but the G.P ignored her and said she was an over anxious mother.

I was soon whisked to Alder Hey hospital, where doctors discovered some vessels had opened in my heart, causing the red nappy. My parents were told if I responded well to the treatment and made it through the night then I would be allowed to return home. I was stabilised and put on more medication.

When I was five years old, in June 1992, I had the first stage of Fontan. It lasted 12 hours. Apparently I had something like a mini stroke and when I came round I couldn’t use my right arm. When I returned to school, I had to learn to write all over again.

I had the second stage of the Fontan procedure when I was 7. Again it lasted 12 hours and the weakness in my right side returned afterwards.

Before I had both procedures, doctors told my parents there was only a 70% chance it would work. The other 30% could be complications or they may even lose me during the operation. However, they insisted that if I didn’t have the Fontan, they didn’t think I would survive. 

As more Complex Congenital Heart patients who have had the Fontan are surving into alduthood, more research has started on the last effects of the life saving surgery. 

We now know it can effect the liver, which I am now also monitored for every 6 months. Also a lot of adults with the Fontan have mental health issues (I myself have Complex PTSD and Borderline Personality Disortder)

No one knows what the future holds, but for people like me who belong to a group of ‘first Fontan adults’ even doctors have no idea. We are all learning together - which I personally find SCARY!