'It's a miracle': Millcreek boy awaits new heart after nearly dying in parents bedroom

Lindsey Allgeier is back at the Cleveland Clinic, waiting for a heart transplant. Only this one isn't for her.

Twenty-two years after Allgeier, 39, received a new heart, the Millcreek Township woman spends most days in the hospital's pediatric intensive care unit with her 6-year-old son, Jonah. It's Jonah who can't leave the hospital until he gets a new heart.

"It's just such a weird, surreal moment. It just can't be happening, can't be true," Allgeier said.

Allgeier and Jonah's doctors agree that it's a miracle the boy is still alive. Like his mother, he has been diagnosed with restrictive cardiomyopathy, where the muscles in the lower chambers of his heart stiffen over time.

Unlike her, Jonah collapsed and went into cardiac arrest after running into his parents' bedroom in the early morning hours of Nov. 26.

"My husband and I put Jonah on our bed, shook him, slapped him in the face and yelled his name," Allgeier said. "He had no pulse. He was not alive."

Heart transplant didn't stop mom from starting family

Allgeier, then Lindsey Fuhrman, was 17 years old when she received her new heart at the Cleveland Clinic following a three-year battle with restrictive cardiomyopathy. It's the same heart that beats in her chest today.

As Allgeier grew from a teenager into an adult, she was determined to start her own family. Doctors advised her not to become pregnant — not because of the risk her children could have the same heart condition, but that the stress of being pregnant could increase her risk of organ rejection.

"I kept asking if there was a genetic reason for restrictive cardiomyopathy and they kept saying there wasn't," Allgeier said. "Their concern was all about the risk of being pregnant."

Jonah was born in 2017. Everything seemed fine until he was about 3 years old, when he couldn't keep up when playing with other children and easily became winded.

Allgeier and her husband, Adam, believed it was asthma, which Allgeier also had as a child. But Jonah started having more episodes where he couldn't catch his breath and his heart would race.

"Eventually we went to a pediatric cardiologist and they did an echocardiogram," Allgeier said. "I have experience with those, so when the technician did the test for a long time, I knew things weren't normal."

The technician left the room and the cardiologist came in to perform another echocardiogram.

"She did the echo and stood up," Allgeier said. "I said, 'Don't tell me he has what I had.' She said he does, and I collapsed."

Allgeier: 'I'd do it all over again'

Advancements in genetic testing between the time Allgeier was counseled about having children and Jonah's diagnosis have shown that restrictive cardiomyopathy can be inherited, said Dr. Shahnawaz Amdani, a Cleveland Clinic pediatric cardiologist.

Had Allgeier known there was an increased risk of her children having the same heart condition, she said she would not have done anything differently.

"I'd do it all over again," Allgeier said. "None of us know all of our genetics. You can't look at it like that."

But the Allgeiers also have a 2-year-old son, Isaiah. Their thoughts immediately went to whether he, too, had the heart condition.

So the family went to the Cleveland Clinic in December 2022 and both boys underwent daylong tests.

"Afterward, the doctor sees us and wants to start with Jonah," Allgeier said. "I said no, you need to start with Isaiah. The doctor said everything looks good with Isaiah. I was so grateful."

Doctors find answer for Jonah's episodes

Jonah did have restrictive cardiomyopathy and would eventually need a heart transplant, the doctor told the Allgeiers.

What they didn't understand was why the boy was having these episodes where he would get out of breath and his heart would race. And why they were happening more frequently.

"In June, Jonah had a heart catheterization," Allgeier said. "The next day he came into our room, crying and then collapsed on the floor. He was conscious but had collapsed."

Jonah had another episode in September, two in October and five in November, including the final one where his heart went into cardiac arrest.

Since he was wearing a heart monitor at the time, doctors were finally able to figure out the issue.

"Jonah's heart rate sped up and there was decreased blood supply to his heart muscle," Amdani said. "His heart rhythm then degraded and he went into ventricular defibrillation."

'It's a miracle' Jonah survived

For three long minutes, Jonah's heart was not able pump blood to his brain and other organs. His parents called 911 and grabbed an automated external defibrillator that had been donated to the family.

Most importantly, they began performing chest compressions on their son, first on their bed then on the floor.

"Three minutes without a normal heart rhythm is long enough to cause damage to the brain and other organs due to a limited blood supply," Amdani said. "Those compressions helped deliver some blood to those organs."

Then something unusual happened. Before the Allgeiers could hook up and start the AED, Jonah's heart went back into rhythm on its own.

That rarely happens without an electric shock from a defibrillator, Amdani said.

"It's fair to say that it's a miracle," Amdani said.

Jonah could remain in hospital for a year or longer

Jonah soon began breathing on his own and his parents carried him to the front door, where paramedics grabbed him and drove him to UPMC Hamot.

It took three people to hold him down during the ambulance ride and he needed sedation once he arrived at the hospital.

"About four hours after it all started, he was still noncommunicative in a hospital bed at Hamot," Allgeier said. "Then he looked at me, said 'Hi Mom,' then turned over and went to sleep.

"I just about lost it."

Jonah was flown by medical helicopter to the Cleveland Clinic where he remains a patient in its pediatric intensive care unit.

Doctors have put him on powerful drugs to prevent the escalating heart rates that led to his cardiac arrest. After some debate among members of his transplant team, it was recommended that he remain in the hospital until a donor heart arrives to better control his condition.

"Even though Jonah is the highest priority for a transplant, the truth is that there just aren't many pediatric donor hearts out there," Amdani said. "The wait is often six to 12 months, or even longer."

Spending a year or longer in the hospital is more than Allgeier can fathom, especially when she knows what lies ahead should Jonah receive a new heart: recovering from surgery, post-operative biopsies, all the medications, and dozens of follow-up visits.

So the family takes it day by day, decorating Jonah's hospital room with Super Mario Bros. posters and celebrating Christmas at the Cleveland Clinic.

"We have rented an apartment within walking distance of the hospital," Allgeier said. "Still, it's been a struggle. My husband can work from the apartment and Isaiah usually stays with him during the day, so all of my attention can be on Jonah. Then my husband comes at night and sleeps in a chair next to Jonah."

Allgeier said her faith in God, which helped her all those years ago, is what keeps her strong now as Jonah waits for a heart.

"I attribute him still being alive 100% to God," Allgeier said. "He wasn't meant to go that night. It wasn't his time."

A fundraising website, https://cota.org/cotaforjonahsjourney/, has been set up through the Children's Organ Transplant Association to help with the family's hospital-related expenses.

Contact David Bruce at dbruce@timesnews.com. Follow him on X, formerly known as Twitter, @ETNBruce.

This article originally appeared on Erie Times-News: Erie-area boy awaits heart transplant 22 years after mom received one