Real life

Patrick's Story

"Patrick is our youngest of three kids and when he was three years old, we were told he had congenital heart disease. It was discovered during an x-ray for a persistent cough, which showed that his heart was enlarged. We were urgently referred to the children’s hospital where he was diagnosed with Ebsteins Anomaly of the tricuspid valve – a very rare congenital heart defect – and a deformed mitral valve. 

We were utterly devastated and shocked. It explained why his activity levels were so different to his siblings. Our little guy’s heart was so broken he couldn't keep up!

Until then we had no idea what a congenital heart disease was. Nor that there could be some so complex and rare, that they were so hard to treat. Like most, we assumed you could have heart surgery and be fixed!!! It was a massive learning curve for us.

Over the next few years he was closely monitored, he required medications and procedures to treat arrhythmias, but then at age six he was declining quite rapidly. Our local hospital in Auckland had very little experience in his particular heart defect and they were unable to offer any treatment to Patrick at that time. He was the only child in New Zealand with this combination of defects. 

After a lot of research, we found there was a new surgical repair being performed overseas in America which was highly successful. However the surgery had been recommended for children younger than Patrick...  we were worried we might miss the opportunity for a successful repair. After a mountain of fundraising, we took Patrick to the Mayo Clinic in America to have a full repair of his Ebsteins or tricuspid valve, by a specialised surgeon.

Unfortunately by the time we got there Patrick was in severe heart failure. His heart had been working too hard for too long. He ended up needing another operation to enable his heart to cope with the repair. His repair was described as the most extensive reconstruction performed on a human valve! Patrick was the first child in New Zealand to have the cone repair.

Luckily he made it through the surgery and after a long and slow recovery back at home, we suddenly had a boy who could run around and play with his brother, sister and friends. Because of his combination of defects, Patrick will never have the same physical capacity as others his own age and he gets tired very quickly. But he is a true fighter, who loves to play soccer, swim, read, draw, write and have fun with his friends.

There are more surgeries to come in the future, but he has taught us, as a family, to value every day and cherish all the small victories. Research into congenital heart disease is so vital. In gives kids like Patrick a future. If it wasn’t for the time and effort his surgeon put into his rare heart condition, we may have lost our boy due to a lack of knowledge and experience," - Melanie, Patrick's mum. 

You can help kids like Patrick by supporting vital discoveries at the Victor Chang Cardiac Research Institute.

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