Akel’s Story

Akel was born with hypoplastic left heart syndrome, a rare condition that would have killed him without treatment. He had his first open-heart surgery when he was only a week old and his second at six months. He spent a large part of his first year in hospital, recovering from complications and doing therapy to catch up on his development.

Akel is so cheerful for a kid who has virtually had to grow up in hospital, his mum remembers him racing around like the Flash on the morning of his third heart surgery.

He was three years old, and that operation was meant to be straightforward. It wasn’t. Akel’s little body struggled to cope, and he had to be attached to an extracorporeal membrane oxygenation (ECMO) machine. ECMO is a life-support technique that takes over the function of the heart and lungs while the body is fighting an illness or injury.

Lyndsey remembers the shock of seeing her son after his 12-hour surgery:

“I cried and had to walk out. His chest was open, and he had all the tubes coming out of him. To see him lying there like that, after he was being cheeky that morning, it was just heartbreaking for me.”

The ECMO saved Akel’s life. But sadly, it could have also left him with long-lasting and deadly complications.

ECMO is a wonder of modern surgery, but the process can result in inflammation and dangerous blood clotting. Kids can be hooked up to the machine for days, weeks or even months – and the more time they’re on ECMO, the greater their risk of organ damage, including brain damage.

With your help, we can fund a world-first study that could make ECMO safer for babies and children like Akel.

Associate Professor Adrian Mattke is investigating the addition of nitric oxide gas to the ECMO process. He’s hoping to find exactly the right level of nitric oxide to reduce the risk of blood clotting and inflammation. He explains:

“We know patients who spend a lot of time on ECMO will continue to need medical help. They may be left with severe lung disease, or mobility issues or neurocognitive problems.

We believe nitric oxide could address coagulation and reduce the inflammatory response for children on ECMO circuit. That would mean shorter runs on ECMO, lower mortality rates and less time in hospital. We hope it would also give children much better long-term outcomes.”

With your help, we want to make sure research like A/Prof Mattke’s is given every opportunity to succeed.

Will you please donate today towards research that will help very sick kids like Akel win their fight for life.