Ollie’s Story

Ollie’s complex heart defects were diagnosed when he was two weeks old during a routine test for jaundice. His mum, Jasmin, shares their story:

(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)

My little boy Ollie was born with a rare and life-threatening heart condition: pulmonary atresia with ventricular septal defect and MAPCAs (major aortopulmonary collateral arteries).

It’s a complex diagnosis. In simple terms, Ollie doesn’t have a normal connection between his heart and lungs, and the vessels supplying his lungs developed abnormally.

He was diagnosed at two weeks old incidentally during a routine jaundice screening. They checked his saturations as part of the test and discovered they were only 85%. He was then rushed to the PICU, started on oxygen and antibiotics (as they didn’t know if it was sepsis). The next morning the hospital performed and echo and it was confirmed Ollie had a heart condition.

It was an absolutely terrifying time, and I still carry so much guilt for not knowing there was something wrong. Had his diagnosis been picked up during pregnancy, at least we could have been prepared.

Ollie, somehow, is continuing to thrive. He’s cheeky, funny and bum-shuffles around all day long. Unfortunately, it won’t be this way forever.

Ollie can’t have the surgery he needs here in the UK. The surgery does exist and is performed in the UK, but Ollie’s heart is unfortunately too complex (more specifically, his pulmonary arteries are too small).

Without surgery, he is likely to continue to deteriorate. We have been told to start taking things ‘month by month’ and he has been moved onto a palliative pathway.

However, the doctor who pioneered the Unifocalization surgery, believes Ollie’s arteries are not too small – in fact he has successfully operated on children with more complex anatomy. He is based at Stanford Children’s Hospital in California, and they have agreed to take Ollie on.

The hard part is that it will cost us £1.5 million for this surgery. We are doing everything we can as a family to raise the funds for his one shot at life-saving treatment. Every share, every bit of awareness, truly makes a difference, because the more people who know Ollie’s name, the closer we get to giving him the chance to grow up.

Thank you so much for reading. And thank you, Tiny Tickers, for helping make sure our heart warrior is seen