WATCH: U.S. family raising awareness about congenital heart defects in memory of son

After the Bertin family of Novi, Michigan said goodbye to four-month-old Landon three years ago, they knew they wanted to contribute to their community in his honour.

Landon was born in January 2012 at 4 lbs 8oz. At his birth he had trouble breathing and a nurse noticed a heart murmur.

After several hours in the NICU, parents Heather and Brian Bertin were told Landon had a heart condition. He was eventually diagnosed with pulmonary atresia with a ventricular septal defect.

During his first six weeks of life, Landon lived in the NICU and had two surgeries performed on him before he was able to join his parents and big sister Addison at home.

“To actually have him home, to be able to feed him and cuddle with him…It was just amazing,” Heather told WDIV.

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At four-and-a-half months, Landon’s doctors were preparing him for a complete heart repair. In order to do that, they had to reverse a bowel surgery to reduce the risk of infection.

“It was supposed to be routine. The doctors told us it would be pretty simple. In and out,” said Heather.

Landon’s heart just wasn’t strong enough and he went into cardiac arrest during the procedure.

“The doctor came out and the world kind of collapsed right then and there,” said Brian. “He said something happened. He didn’t make it.”

The Bertins are now determined to bring awareness to congenital heart defects, which is the most common birth defect in the U.S.

Last year, they participated in the Michigan Congenital Heart Walk with their team “Landon’s Heart & Sole” and raised over $2,000. They will be participating again this fall and have a goal of raising at least $3,000.

“There definitely needs to be more awareness, definitely more funding, so that they can do the research and help these children,” said Heather. “And hopefully, hearing Landon’s story and doing our part in the world, we can change the story for another family.”