When Bridger Kaiser was born he seemed like a normal, healthy baby. No problems showed up on any sonograms while he was in the womb, and after his birth, his heart and oxygen levels seemed normal.

But just 36 hours after his birth he was screened for heart defects and he kept failing the tests. Doctors screened him several times as they tried to figure out what was wrong with his heart. That’s when he started to turn gray, his mother, Valerie Muñoz-Kaiser, said.

He was being treated at Parkview Health in Fort Wayne, Indiana, but the doctors were unable to treat his specific heart defect, and they needed to act fast. They contacted Peyton Manning’s Children’s Hospital and Riley Hospital for Children, and Riley responded first.

The children’s hospital in Indianapolis asked for a follow-up echocardiogram to get a better picture of Bridger’s heart. The diagnosis was hypoplastic left heart syndrome, which is fatal without quick intervention. The hospital sent a team to get Bridger and take him to Indianapolis.

Children with hypoplastic left heart syndrome use less oxygen than those with healthy hearts, often leading them to look blue. Valerie watched as her son started to turn blue and puffy because of the lack of oxygen and chest compressions.

“He didn’t look like the baby I had just given birth to,” Valerie said.

Bridger had his first surgery at two weeks old.

According to the Centers for Disease Control and Prevention, children born with hypoplastic left heart syndrome typically go through three surgery stages: one within the first two weeks after birth; the second usually between two and four months after birth; and the third between 18 months and three years after birth. The stages are the Norwood, Bi-directional Glenn Shunt and Fontan procedures, respectively.

These surgeries do not cure the disease, but they make it easier for children to live with a barely-functioning heart. Many people who grow up with hypoplastic left heart syndrome end up needing a heart transplant, but Valerie said a transplant isn’t a viable option for Bridger.

Bridger, who is now 19 months old and lives in Kokomo, Indiana, isn’t currently eligible for a heart transplant, his mother said, adding that he’d have to be in serious heart failure to be eligible for one. And even if he did receive a transplant, there’s a chance his body could reject the heart or go into organ failure after a few years.

“The longer we can get him to live with just the half a heart he has now, the better off he’ll be,” she said.

But there is a ray of hope. Bridger’s doctor, Mark Rodefeld, is currently working on creating a pump that could help children with Bridger’s condition. The Fontan Blood Pump would help Bridger’s heart pump blood to the rest of his body, almost like a normal heart should. The pump is designed to help reduce the need for a heart transplant.

The device has a GoFundMe page dedicated to raising money to fund research and promotion of the pump, with a fundraising goal of $100,000. Over $59,000 has been raised since November 2016.

For the first several months of his life, Bridger used a feeding tube, and he still has trouble eating or drinking. His mother said he has oral aversion, meaning he doesn’t want to put anything in his mouth.

And while the condition has obviously been difficult for Bridger, it has also been hard on his mother and her family, she said. She has two older daughters who can sometimes get lost in the shuffle of dealing with Bridger’s health issues.

To combat this, she’s hired an in-home nurse who can give her and her husband a chance to spend more time with their daughters.

It’s also difficult when the family goes out in public, she said, because Bridger has a tube attached to his stomach.

“That was hard to get over, wanting to tell people to stop staring,” she told the Kokomo, Indiana Tribune.

Today, Bridger is doing well for kids at his age with his condition. He battled two colds this past winter, which his mother said were concerning because any virus could be life-threatening for Bridger.

He’s also prone to strokes. Muñoz-Kaiser said she learned about a month after Bridger was born that he’d had a stroke in the womb, leading him to be especially vulnerable to strokes and seizures now.

But with regular visits to a neurologist and anti-seizure medication, he’s relatively stable, Muñoz-Kaiser said, adding that he’s developing in other ways just like a normal child would. He’s able to talk as much as any other 18-month-old child, and he’s growing at a healthy rate.

Muñoz-Kaiser said Bridger’s doctors have been pleased – if not slightly surprised – by Bridger’s physical progress. His doctors didn’t expect him to be able to walk until late this summer, but Muñoz-Kaiser said her son was starting to walk by Thanksgiving last year.

Aside from his feeding tube and his skin occasionally turning a slightly bluish color, Bridger looks and acts like a normal child. Valerie said she’s hoping Rodefeld’s device-in-progress can help his heart do the same.

Pemberton writes for the Kokomo, Indiana Tribune.