Health

Monday 22 September 2014

Hypoplastic Left Heart Syndrome: 'Braiden is a miracle, and he will probably outlive me'

After suffering a stroke following his second major heart operation, Colette Dunphy's son has defied the odds, writes Anita Guidera

Colette Dunphy was more proud than most parents when she cheered her son Braiden across the finish line at his annual school sports day last week.

Who could blame her? At just seven years old, Braiden -- the grandson of RTÉ sports pundit Eamon Dunphy -- has defied survival odds more than once in his short life.

A year ago, the schoolboy -- who was born with Hypoplastic Left Heart Syndrome, a rare type of Congenital Heart Disorder (CHD) -- suffered a stroke.

He had just undergone his second major heart surgery to construct a new aorta at Our Lady's Children's Hospital in Crumlin.

"The surgery was traumatic. It wasn't meant to go the way it went and it turned out extremely bad. At one point it was quite unlikely Braiden would survive to get into ICU," Colette recalls.

But he made it through only to suffer a devastating stroke on the left side of his body days later.

"There was a two-week period when the thought of Braiden not making it was constantly in my mind, so when the hospital called him a miracle, he really is a miracle.

"It is quite extraordinary what he has managed to do," says Colette.

Despite ongoing rehabilitation, Braiden returned to St Mary's NS in Woodside, Sandyford, last September to begin second class with his friends.

"He has had to do a lot of physio work, but he is very determined and very brave. When your child is only seven and they go through so much you don't know how they will react, but when they react like Braiden did it gives you hope and strength.

"He is so funny and so, so bright -- he is just a great kid," says Colette, who also has a two-year-old son, Zack.

In the past year, an unstoppable Braiden has taken up karate and it was at his insistence that he take part in the sports day last Wednesday, despite the reservations of his concerned mother.

"Beforehand, I said to him that he didn't have to go if he wasn't up to it and he said to me, 'Mum, it doesn't matter if I lose because everyone is a winner'," says an emotional Colette.

"I'm thinking: He is seven and he is trying to reassure me that it doesn't matter if he doesn't win. He has never once said, 'why does this have to happen to me', he just gets on and he does it. He is such a trooper. He will probably outlive me."

Despite his young age, Braiden understands the continuing limitations of his condition.

"He knows what he can and can't do. He manages it very well. He is quite aware of when he might need to take a break and that there are some days he just can't do things and he just gets on with it," says Colette.

But she has discovered that having a child with a chronic health condition means a constant battle with the HSE for essential services.

Some months ago, she was forced to turn to the media, using her well-known father's name, to finally get the medical card to which her son was entitled. After a six-month delay, the card arrived a day after the story was published.

Just before sports day, she took Braiden to the Enable Ireland clinic to collect a foot brace for which he had been fitted four months ago, only to be told that the HSE still hadn't signed off on it.

"Four months on and we are still fighting. He is seven. He had a stroke. He wants to walk properly and play with other kids and you think, 'God in heaven, he's been through so much. Let him have something'," says Colette.

The normally cheery little boy burst into tears when he found he could not leave with his new walking aid.

"It will give more balance and stability. He had picked out the colour and was so excited about collecting his little foot brace, but he had to leave without it because somebody can't fax something," she fumes.

Braiden is one of about 100 children diagnosed every year with CHD.

Colette has since become an advocate for the charity Heart Children Ireland, which has raised hundreds of thousands of euro for essential life-saving equipment and services for children born with CHD.

One such piece of equipment was an Ecmo machine, which Colette knows kept her son alive for a vital four days following his surgery last year. The latest, an Advanced Diagnostic 3D Echo Machine, was recently launched by Dr James Reilly.

Thanks to such advances in technology, 95pc of children born with heart defects today will progress into adulthood.

Irish Independent

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