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!