“I’m gonna get a new heart soon:” 7-year-old awaits life-saving gift

Published: Aug. 26, 2021 at 9:59 PM CDT
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TOPEKA, Kan. (WIBW) - Elijah appears to be a typical seven-year-old when he hits the playground with his sister, Kinley.

“He’s a goofball,” Ali Diaz, his mom, said “He’s funny. He likes to make people laugh.”

But behind the smile, lies determination and a lot of heart - even if part of Elijah’s heart is missing.

“Elijah was born with a congenital heart defect called hypoplastic left heart syndrome, so essentially the left ventricle was severely underdeveloped,” Diaz explained.

Elijah underwent his first open heart surgery when he was just three days old. Dr. Brian Birnbaum, a pediatric cardiologist at Children’s Mercy Hospital in Kansas City, is one of Elijah’s doctors.

“All of us have the left side of our heart that pumps blood to the body, and the right side of the heart pumps to the lungs, and Elijah really wasn’t born with the left side of his heart,” he said.

Dr. Birnbaum says typical treatment is a series of three surgeries. Elijah had the first two, but his body hasn’t responded the way it’s needed to for the third.

It leaves the family with one option.

“I’m gonna get a new heart soon,” Elijah said.

Elijah, a second grader at Farley Elementary School in Topeka, was added to the heart transplant list in mid-July.

“His oxygen levels are just decreasing. His heart function is decreasing,” Diaz said. “The older he gets, the more I realize the less he can do do like other people.”

Still, Diaz says Elijah never complains. Even when he has to sit out gym class, or falls behind on the playground, she says he is genuinely happy to cheer on other people, and offering what help he can.

Elijah admits he sometimes feels tires.

“(I feel) like I need to rest because I’m walking a lot,” he described it.

Dr. Birnbaum said, as time goes on, Elijah’s symptoms likely will worsen.

“What we’re going to see is sort of a slow decline if we’re not able to find a donor heart for him, in the form of his oxygen saturations getting lower, and a lot of times, that can lead to more damage to his other organs such as his liver and his kidneys,” he said. “We try to keep those organs as healthy as we can going into transplant.”

It means the clock is ticking - and the unfortunate reality is another family must suffer a loss to give Elijah a gift for which Diaz says she can’t even begin to express her gratitude.

“I don’t think there’s any words that would make it better for that family, even if they’re saving my son,” she said.

Dr. Birnbaum said it shows how powerful organ donation can be.

“I think it’s really important for families to have that discussion with each other, and parents to discuss what they’d want for their children,” he said. “When somebody donates organs, a lot of lives could be affected. Up to 14 different lives could be affected through organ donation, so it gives your family a chance to keep their memory alive and provide life for lots of other families.”

Diaz says they’ve had a lot of support along their journey.

“It’s much appreciated to know, and to know that we have help and people that are praying for us and looking out for us,” she said.

Elijah expects he’ll shift gears for a brief slowdown after his transplant.

“When you get a new heart you have to rest for a little bit and heal it,” he said.

No matter the outcome, his mom says, his heart is full in every way that matters.

“We’re excited to see him play and run and keep up with the other kids,” she said. “I hope he gets to live a long, happy life.”

Elijah’s family has insurance, but they still face expenses traveling to Kansas City often several times a week for medical appointments. They also face a likely two-month stay there when Elijah gets his transplant. If you can help the family, you can donate through this GoFundMe page.

Children’s Mercy partners with Stormont Vail to offer pediatric cardiology services in Topeka, helping many families avoid extra travel. Elijah has not been able to do so yet, because his case is so complex.

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