"My son has survived two open heart surgeries. He is not yet 18 months old."

By ZOE GONZALEZ

My son has survived two open heart surgeries.

He is not yet 18 months old.

William has half a heart, technically called Hypoplastic Left Heart Syndrome. It has been a rollercoaster ride of emotion since our little miracle was first diagnosed. I have felt relief, pain, fear, grief, happiness, anger and everything in between.

The journey began at our 20 week pregnancy scan, when our doctor informed us our first child would be born with Hypoplastic Left Heart Syndrome, one of the most severe heart defects. It is fatal without surgical intervention.

William is a ‘heartkid’ – one of six babies born in Australia every day with childhood heart disease (CHD). CHD is the number one cause of death and early hospitalisation in Australian children under the age of one.  It is not a single condition, but includes a wide range of heart defects. There is no known cure.

The first few days of our heartkid’s life were a whirlwind of activity and emotion. William was in a real hurry to meet us! He was born four weeks early and my labour lasted just under three and a half hours. In the grand scheme of things my labour was calm and relatively uneventful. We fell in love the second William was born and it was such a relief when he screamed. We were lucky to have four hours of cuddles with him before he was whisked away by the Newborn Emergency Transport Service to the Royal Children’s Hospital, Melbourne. It was then an agonising three weeks until I next held my baby boy.

Day two of William’s life began with a “see you soon, little man”, as our 2.45 kilogram newborn was wheeled into the operating room for the first of two open heart surgeries. Twelve hours later the phone rang – the surgery was finished and despite very poor odds, William had made it through. We would have to wait to see him and the next two hours were almost unbearable. All we wanted was see our boy.

When we were finally allowed to see William, I was completely overwhelmed. My tiny, two-day old baby was buried in tubes, wires, drains, machines and medication. All I wanted was to hold him and make it all disappear – the power of a mother’s pure instinct is immeasurable.

Recovery was slow. We spent the next six weeks by William’s bedside in the Paediatric Intensive Care Unit. We were told William would probably bounce between intensive care and the ward until his second surgery, but we reached a milestone at nine weeks. William was allowed home for the very first time, just in time for Christmas. What an amazing early Christmas present!

We were overjoyed to have William home, but also very nervous. We cherished every day and began to feel like a real family. We knew this wasn’t permanent. When William was admitted for his second open heart surgery at 12 weeks old, it was that little bit harder. William’s second surgery lasted seven hours and though complications arose, our warrior pulled through and was back to giving us cheeky smiles within days.

Ten days later, William came home. He had a nasogastric feeding tube, a feeding pump and several different medications. Most of all, we came home with hope – it was time for our little family to really start living. Recovery was long and slow, but our William got there.

William will be two this October and we cherish every single day with him. We celebrate every milestone because, the thing is, surgery is not a cure. This is not the end of the road for William and he will continue to require ongoing medical treatment for the rest of his life. He will need more surgeries as his heart grows and he may experience delayed physical and emotional development.

While there is still much to learn about the causes and cures of CHD, the work done by organisations like HeartKids helps to fund life-saving research, education and support for those affected. Along with unwavering support from our family and friends, this can go a long way towards helping children and families affected by childhood heart disease.

Show your support for the many families affected by childhood heart disease this Valentine’s Day. HeartKids Australia, the national charity supporting children and families affected by CHD, is launching Sweetheart Day on 14 February to raise awareness and encourage donations.

Be a sweetheart and purchase a virtual Valentine’s Day gift or make a donation online at www.sweetheartday.org.au. #sweetheartday

Zoe is mum to William, a ‘Heartkid’. William is her first child. Zoe and her family have been supported by HeartKids Australia in their fight against childhood heart disease, the number one cause of death and early hospitalisation of Australian children under the age of one.

HeartKids Australia is a registered national health charity. Working with health professionals, HeartKids provides lifelong support for those with Childhood Heart Disease and their families Australia-wide. HeartKids also funds life-saving research, advocates and informs. To date, HeartKids Australia has committed more than $2 million to fund research into reducing the incidence and mortality rate of CHD.