ABOVE: Sick Kids became one of the first institutions in North America to use the Berlin Heart and so far it’s helped more than two dozen kids at the Toronto hospital. Global’s Crystal Goomansingh reports.
TORONTO – She may be the most patient little girl in Canada. Sophie is 2 years old and has been on a wait list for a heart transplant since March 2013. For now, the toddler is counting on an artificial heart to keep her going.
In February 2012, at just 10 months old, Sophie was diagnosed with dilated cardiomyopathy. Her mother, Dominique How Chun Lun knew something was wrong because her daughter’s voice was growing weaker and weaker.
“She was breathing very hard and she was puffy and lethargic,” How Chun Lun told Global News.
That’s when they learned that Sophie’s left vocal chord was paralyzed and that her heart was enlarged in the left ventricle.
Dilated cardiomyopathy is a disease in the heart muscle that affects your heart’s main pumping chamber. For the first year, medication seemed to work but by last March, Sophie’s health began deteriorating.
Sophie’s also brave: at a year old, she joined a lengthy wait list for a transplant then underwent surgery at Sick Kids Hospital to be connected to a Berlin Heart. The blood-pumping device acts like a bridge for kids on waiting lists for heart transplants.
And it’s been a game-changer for doctors working with heart transplant patients, according to Dr. Anne Dipchand, a professor of pediatrics at the University of Toronto and head of heart transplants at the Hospital for Sick Children.
“The Berlin Heart is used to support children with heart muscle disorders that have to wait for a heart transplant… Not even long ago we had to use much bigger and more invasive machines to keep these children alive to wait,” Dipchand said.
“So the Berlin Heart has very much revolutionized our ability to take care of these children while they wait for a heart transplant. Sophie’s a fabulous example. She was so sick and scrawny when we put the Berlin Heart in her last March,” she said.
With the Berlin Heart, patients can be cared for in hospital but outside of the ICU while the technology pumps blood for them. They’re also mobile so they can take on rehab and physiotherapy so they’re keeping strong leading up to their heart transplant.
“It’s helping her grow. She can go for walks, she can play, she can sleep, she doesn’t have to keep staying in bed,” How Chun Lun said.
Now, she takes on colouring, using Play-Doh to make animals and playing outdoors – just like any other toddler.
By 2004, Sick Kids became one of the first institutions in North America to use the Berlin Heart and so far it’s helped more than two dozen kids at the Toronto hospital. In the entire continent only about 350 pediatric heart transplants take place each year, Dipchand said.
Kids can survive with the technology for months to even years. About 25 to 30 per cent of kids encounter some kind of side effect after being on it.
Blood clots, for example, could lead to things like strokes and infections – that’s what doctors worry about the most. This is why most kids on the Berlin Heart, like Sophie, take blood thinners to help them.
What’s next for Sophie hinges on when she can get a donor heart. On average, for a child her weight and size, it could take up to a year.
Once the transplant is done, her chance of surviving her first year post-surgery is 95 per cent. Her chance of being alive in 20 years are over 50 per cent, Dipchand said.
“She actually has a good long-term outcome if she can just get a donor organ,” Dipchand said.
“Our biggest challenge for children like Sophie is keeping them alive until a donor organ becomes available. That’s really due to the scarcity of donor organs,” she said.