That research is critical to helping AHA make a healthier, longer life possible for everyone, including five-year-old Bridger Kaiser.
Bridger's mother, Valerie Munoz, says he started having health struggles just 36 hours after his birth in October 2015.
"We had no idea that he had the heart defect he has," says Munoz. "He just went in for a routine pulse ox test, which is mandated, and he failed five of them."
Bridger was born in Huntington, Indiana, and had to be transferred to a Fort Wayne hospital after failing the pulse oximeter tests. As the NICU team arrived, Munoz says Bridger's condition started going downhill quickly and he was transferred by Life Flight from Fort Wayne to a children's hospital in Indianapolis.
Doctors later discovered Bridger was born with hypoplastic left heart syndrome, meaning the left side of his heart is underdeveloped.
"That's where they told us the survival rate and the series of surgeries he would need. There wasn't a surgery to cure his heart defect. It was what they call palliative care," says Munoz.
Bridger underwent the first of three heart surgeries two weeks after he was born. After making it through surgery, Munoz says Bridger was placed on an extracorporeal membrane oxygenation machine (ECMO) to increase the amount of oxygen in his blood.
But, after four days, Bridger ran into more complications and was taken off ECMO.
"They couldn't control the bleeding, and you have to be on a blood thinner to be on ECMO," Munoz explains. "He was having a lot of neurological problems. He was having seizures."
Doctors weren't confident Bridger would survive being taken off ECMO so soon after surgery, but he ended up doing well.
Following being taken off the machine, Bridger underwent a routine MRI where doctors found he suffered a stroke before he was even born.
"They said he would more than likely have cerebral palsy, be blind, and spend his life in a wheelchair. Bridger doesn't spend his time in a wheelchair. He's not blind. You would not even know he has any of these problems at all, and he's had the last two surgeries after the Norwood and he's done fantastic since then," says Munoz.
In the five years since his birth, Munoz says he's grown aware that he lives his life a little differently from other little boys his age, but that doesn't stop him.
"Probably about two years ago, he was really self-conscious. He didn't want to wear button-up shirts, and if he did, he wanted them buttoned all the way up," says Munoz. "We've just given him a lot of comfort, that it's ok that he has these scars and it's what makes him special, and he's starting to get a lot better."
Bridger has a gastronomy tube in case he needs a little help eating, and the family takes precautions to keep him safe during cold and flu season. Those precautions became more critical--and extended--as COVID-19 spread in Idaho.
"We've always during the cold and flu season kind of quarantined and the wiping off of the baskets so it's not much different. It's basically that cold and flu season has run for forever," Munoz explains.
Despite the pandemic, Munoz says they've tried to keep coming up with ways to help Bridger have a normal life, including some COVID-safe family trips.
"We did a lot of camping this last summer and spring and that was a blast for him and his sisters so they could feel normal and be safe at the same time," says Munoz.
Munoz says right now, the percentage rate for survival into adulthood for someone with Bridger's condition isn't great, but it's getting better thanks to research. That research, funded in part by campaigns like Life is Why, is something she says can help not just one child like Bridger but eventually all children.
"I have always, pretty much since Bridger was born, taken time to reach out and know about research and campaigns that fundraise for research to improve the odds for all of our kids. All of them. Because even if they improve it for one type of heart defect, that can evolve into more severe heart defects and can give better outcomes for these kids, improving their quality of life," says Munoz. "It's important for me to make sure Bridger has a quality of life."
Munoz says for parents facing a similar situation for their children, it's important to remember to take time for themselves. She suggests finding support groups, both online and in-person, and doing your own research to understand what the future looks like for your family.
This year's Life is Why campaign runs from March 10 through March 31. You can show your support by donating $1, $3, $5, or rounding up to the nearest dollar while checking out at your local Albertsons.