By Charlie’s mum, Mel
At six months of age our amazing little man Charlie lights up the world with his smiles and giggles, he puts his hand out to passing doctors, nurses and visitors and captivates everyone he meets. He is such a happy little boy with a curiosity about everything that exists in the world.
Charlie has over 500 heart beads representing more challenges than most of us will ever know. He’s had emergency helicopter and plane rides, a stroke, two open heart surgeries, a cardiac catheter lab and countless other procedures.
He’s spent more of his life in hospital than at home.
We were lucky to find out that Charlie had complex CHD before he was born at our 20 week scan. Our family including Charlie’s older brother and sister relocated from Canberra to Sydney four weeks before he was due to be born so that his care at birth could be taken over by the amazing team at Westmead Children’s hospital.
Charlie was born with complex CHD including pulmonary atresia, a large VSD and collateral arteries – he was born without a heart valve and without the normal connection between his heart and lungs.
Without surgeries and intervention a baby with Charlie’s condition has a life expectancy of less than a year. However we are so lucky because we live in Australia where world class medical and surgical treatment is available for babies like ours.
Whilst there is incredible sadness involved with watching your child face difficult odds, we have also experienced a tremendous amount of hope and joy. The altruistic world of people that surround you when you have a heart kid is truly inspiring.
From the hands of a surgeon that works her only Sunday off to operate on your child to the volunteers who knit him a blanket for comfort and the HeartKids family support coordinators that provide practical support as well as messages of future and inspiration.
It really takes a very big village to raise a Heartkid.
June 6th, 2016:
Charlie saw his wonderful Cardiologist – Doctor Cooper today.
His heart is doing great although he will need a Cardiac Catheter to put a stent in his pulmonary arteries sometime in the next few months to help with some pressure in his right heart. He will also need tummy surgery to give him a peg and fundoplication to help his GORD and some more throat surgery. All should have only a night or two stay at the hospital.
He also went to his first community occupational therapy (OT) session today. He had great fun demonstrating his progress and is up to date with a number of his milestones now for his fine motor skills. His gross motor skills will still need a bit of help along (but hey, his mums aren’t great sometimes either). He got fitted for a special stroller/seat to help him along with that a bit. We love OT!