As the mother of a heart kid, life is a constant balancing act between hopefulness and anxiety as my family navigates the unknowns of childhood heart disease. My son underwent three open-heart surgeries before his sixth birthday. We have spent countless hours in the intensive care unit and hospital waiting rooms with our fingers crossed, hoping he would make it through.
We arrived at the 18-week scan feeling positive and excited.
With three successful and healthy pregnancies under our belt, we arrived at the 18-week scan feeling positive and excited. We’d decided to find out the sex of our child and we couldn’t wait to share the news with our family. We left shocked and blindsided. We’d been told our unborn fourth child had a very serious and complex congenital heart defect and he’d need surgery as soon as he was born.
The rest of the pregnancy was emotionally challenging, as we faced a world of unknowns. We weren’t sure what to expect as a family or what the future would hold for our baby boy. On receiving the news, we anticipated a move from Sydney to Melbourne to be close to William’s doctors. We spent a stressful week trying to figure out how we’d move our three kids interstate and manage our business – a bakery – remotely. Thankfully, the outstanding doctors at the Heart Centre for Children at Westmead Hospital were able to treat our boy in Sydney.
The next five months were spent preparing for William’s arrival. It was a little different than usual – in addition to the joys of decorating his room and putting together a cot, we were consulting our paediatric cardiologist and showing our three very excited children pictures of what to expect when their new brother was born.
He looked perfect, but with this 'broken heart', I knew time was crucial.
William was born on 25 January 2007 and was immediately whisked away to the children’s hospital. It was five hours before I got to hold him for the first time. He looked perfect, but with this ‘broken heart’, I knew time was crucial. The cardiac surgeon explained that William wouldn’t survive more than a few days without open-heart surgery.
William had his first heart surgery at 38 hours old. It lasted seven hours and although it went well, he deteriorated overnight in recovery. His chest was opened for a second time in the children’s intensive care unit, only to have the doctors find there was nothing to repair, so it was a waiting game as we sat beside him until he stabilised.
The next three weeks were spent mostly in intensive care as William’s condition slowly improved. It was a difficult time for our family. For the first time, our three other children were away from us while our wonderful mothers cared for them. We did our best to visit, but getting away from the hospital was hard so it was mostly phone calls. Our business continued to run, which meant balancing hospital visits, the kids and the worry of having a very unwell child with managing daily operations at our bakery. Twenty-one long days later, William was free to come home and meet his siblings, on the condition he was back regularly for check-ups with the cardiologist.
His left ventricle in his heart wasn't functioning properly.
All was going well at home and William was settling in with his siblings, until seven months later, when the cardiologist discovered his left ventricle in his heart wasn’t functioning properly. We began to prepare for his next operation – a long and complex procedure – and make arrangements for the other kids to be cared for. The surgery took seven and a half hours and we ended up spending three long weeks in the hospital. We made it home just in time for William’s first Christmas.
The next five years involved lots of regular check-ups and in November 2012, William had his third and, hopefully final, heart operation. The surgery went well – William looked so pink. I’d never seen him with pink toes and warm feet; only blue and cool.
William seemed to be recovering well, but with less than 10 days to Christmas, he became breathless, pale and lethargic. He was re-admitted to the hospital with a large amount of fluid in his right lung, and was urgently operated on.
What followed was five weeks of ups and downs, as William trialled different medications and wasn't allowed to eat or drink. We missed Christmas at home that year. William celebrated his sixth birthday in the hospital. After having his chest drain dislodged and removed, he had a birthday party at the hospital playground. On 8th February 2013, after 54 days in hospital, he finally came home.
Childhood heart disease is the biggest cause of death in children under the age of one in Australia and it can affect any family. Eight babies are born every day with a heart defect and four precious lives are lost a week. There are approximately 32,000 Australian children with childhood heart disease. It is not the result of lifestyle factors and a diagnosis is often received without warning.
It was during those long hospital stays that the Chamberlain family came to truly value the support of not only family, friends and William’s medical teams, but that of the support coordinators at HeartKids. HeartKids is a national health charity that works with health professionals to provide lifelong support for those with childhood heart disease and their families Australia-wide. It also funds lifesaving research, advocates and informs.
“Knowing our son was surrounded by wonderful, caring people made the long hospital stays much easier to bear.”
To help support families like Lisa’s, visit HeartKids at heartkids.org.au
This article first appeared in CHILD Mags November 2016
Image by: Jenn Richardson