Treena Appleby was 19 weeks pregnant when she received the devastating news that her unborn son had hypoplastic left heart syndrome - or, in layman’s terms, he only had half a heart.
The Applebys were referred to a cardiologist who offered them a choice: to keep the baby or not. They decided to proceed with the pregnancy and deal with the consequences of the condition.
So at only four days old, tiny baby Daniel underwent his first open heart surgery. He had two more before his first birthday.
"Basically, the doctors have needed to reroute his arteries to improve blood circulation and avoid overworking his heart, do a bit of 'plumbing', as Daniel's surgeon would explain," Appleby said.
Daniel will require one more surgery when he’s around four, but he’ll always have half a heart.
Daniel’s condition is rare, but the group it belongs to, congenital heart disease, is not.
Jann Kingston, CEO of Heart Kids Australia, explains, “Congenital heart disease is not a single disease, but a general name for any disorder of the heart or the central blood vessels, that is present at birth.”
Heart Kids Australia estimates that six babies are born in Australia each day with heart defects, which is over 2000 babies (‘heart kids’) a year. These children are born with conditions that might include defects of the major blood vessels, holes between the pumping chambers of the heart, malfunctioning heart valves or a combination of these conditions.
The health charity provides support to families of children affected by heart disease. Their work also focuses on raising awareness of childhood heart disease and funding research into the causes and treatment of the condition.
“The prognosis for each child varies, and over 200 children die every year.”
“However, as a result of improvements in medical treatments, the outcomes for these children are improving all the time,” says Kingston.
But impact on their little lives can be significant, with many kids not meeting their developmental milestones – both physically and intellectually.
In Daniel’s case, Appleby recalls that his weight gain was very meagre before his last operation, which was performed to improve blood circulation to the lower part of his body.
“Sometimes he was gaining only 20 grams in a month,” she says.
In addition to the slow development, ‘heart kids’ may also need regular medication, testing and monitoring.
“Daniel has to have his diuretics and medication to regulate his blood pressure every day,” she says.
Although a little bit behind with his motor skills, 14-month-old Daniel is now slowly catching up, gaining weight and moving about, says Appleby.
“He’s actually in daycare with his big brother Eddie a few days a week. I can treat him like a ‘normal’ baby now,” she says.
As upsetting as having a child born with a heart defect is, watching an otherwise healthy child acquire a heart problem in childhood offers a different set of challenges.
The second group of children where their heart function is compromised is when they develop heart disease, due to infectious conditions like rheumatic fever. Kawasaki disease and cardiomyopathy are other conditions which can cause the heart to become inflamed, and can contribute to serious problems such as heart failure.
Although uncommon, Kawasaki disease affects kids under five years of age, whereas cardiomyopathy can affect children and adults of all ages.
Rheumatic fever is more common in Australia, with the highest rates observed in the 5-14 age group. It’s more common in indigenous populations.
Treatment for these conditions may involve antibiotics and anti-coagulant medications. Sometimes, heart surgeries may also be required.
“Kevin Rudd is Australia’s highest profile ‘heart kid’. He contracted rheumatic fever as a child and that affected his heart. He has had two operations to repair the damage caused,” says Kingston.
“Life with childhood heart disease is challenging, and sadly, some children do not survive. However, Mr Rudd is proof that a near normal and successful life is possible for heart kids,” she says.
February is International Heart Awareness Month and February 14 is Childhood Heart Disease Awareness Day. If you want to help mend a broken heart, visit heartkids.org.au for information on how you can assist.