One gift could save Owen’s life

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Posted: December 2012

Treating HLHS was impossible in the past. Now, these children are surviving to live longer, healthier lives.

The trees are trimmed, the lights are shining, and festive colors streak through storefronts to highlight the latest toys, gadgets and gifts - everything people should want at the holidays. But there’s only one gift that Laura Veloso wants - the gift of more time to spend with her little boy, a boy who desperately needs another heart surgery just to make it to his fifth birthday.

Owen is Laura’s third child, but his birth introduced her to a scary reality. “Since Owen was born, I’ve been to more funerals for children than adults - it’s just not right,” she says. “These children were born with congenital heart defects similar to Owen’s - and they died so young - only a few years old.”

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Owen’s condition is called Hypoplastic left heart syndrome (HLHS) and it prevents the left side of the heart from developing and functioning normally. Owen needed his first open-heart surgery when he was one week old, but there were complications - his aorta closed quickly and he went into cardiac arrest. Physicians massaged his heart to get it beating again and then had to put him on extracorporeal membrane oxygenation (ECMO), a machine that oxygenates blood outside the body before pumping it back in. Then Owen began to have seizures and doctors discovered that he’d had a stroke.

But for a boy with a broken heart who runs out of breath going up stairs, doesn’t feel hungry and is almost the same size as he was a year ago - he is all smiles. Laura catches him trying to make her laugh and putting on a show whenever he has an audience. She says he’s even quite a flirt - opting to take ballet classes to snuggle up to his classmates and teachers. “He just loves the attention and affection. I think it’s because he’s been in the hospital so often, constantly meeting new people. He warms up to people quickly.”

Right now, Owen takes nine different medications and needs to be fed through a tube in his belly for two hours every day and all night long. He’s had four open heart surgeries already, but this final surgery could mean he finally starts to feel hungry, to have more energy, to breathe properly - and to grow. His heart medications need to keep working, so Owen is healthy enough to make it to the final surgery. If he’s too sick when the time comes, he may not be eligible - or he may not survive. There is a lot resting on this one procedure. “We know it’s a major surgery. It’s always there looming and you want to get over with it but at the same time you’re dreading it because there are so many things that can go wrong,” Laura says. “But when your child is sick, you do what you need to do. There’s no pause button.”

Treating HLHS was impossible in the past. Now, these children are surviving to live longer, healthier lives. In 2007, Heart and Stroke Foundation funded research examined how rain damage could be minimized in children while performing surgery to correct this condition. However, more research like this is needed to improve treatments and help more children like Owen survive.

Laura says she hopes her story can show people that research make help kids like Owen get more chances to live the long, full lives they were meant to have. “That one donation could be the one that funds the next life saving treatment,” Laura says. “You don’t know what penny is the one that will tip it to be just enough - enough to save a child’s life.”

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