Care of a community and medical experts made all the difference for a 9-year-old stroke victim who celebrated his 10th birthday this month.
Jacob Heberling, 10, Amherst, is expected to remain at a Pittsburgh hospital for another three weeks for therapy after a successful heart transplant.
From noon until 7 p.m. Oct. 10 at Park Lanes, 249 Park Ave. in Amherst, people can help Jacob and his family at a bowling benefit, which results from friends standing in the gap of a family caring for their son’s medical needs.
To Martin and Kyle Heberling, his parents, Jacob was a healthy boy playing with friends and attending school.
Without their knowledge, a congenital illness progressively deteriorated Jacob’s health.
At a baseball game May 30, Jacob didn’t quite feel right. Then at 2 a.m., May 31, Martin Heberling awoke to a thumping noise in their home. He investigated.
“I found him lying on the bathroom floor,” Martin Heberling said. “He was making a pounding sound. I thought he was having a bad dream. I talked to him. It feels like an eternity now, but it was probably only a few seconds. I was talking to him. He was mumbling. I couldn’t understand. He yells out, ‘I can’t.’”
Later Jacob, told them he felt numb, the father said.
They took him to Mercy in Lorain. The nurses and doctors immediately requested an ambulance and he was transported to Rainbow Babies and Children’s Hospital in Cleveland.
Kyle Heberling rode in the ambulance with Jacob. Martin Heberling drove their vehicle.
“It wasn’t easy. I just wanted him to be better. I had no idea what was wrong,” Martin Heberling said. “They said he may have had a seizure, but he never had one before. He was nine years old and never had a medical condition, ever.”
The possibility of his child’s having a stroke never occurred to him. He found out after the frantic drive.
“I went into the room, and everybody was out of there,” Martin Heberling said. “I looked around the room. There was a piece of paper that said, ‘Stroke.’ A doctor came in. He said there was a blood clot in the brain. They needed to remove it immediately. I signed the papers. It was very scary.”
Jacob went in for surgery about 4:30 a.m., which concluded about 9 a.m.
“They said they removed the blood clot, the father said. “It was a miracle. They had to find out where it came from. They thought it might have come from his heart. It went from great news to something worse.”
Doctors diagnosed Jacob with restrictive cardiomyopathy, which is the rarest form, his father said.
“It also is irreversible,” he said. “It gets progressively worse. The only solution is a heart transplant.”
Jacob was born with it and doctors never detected it, Martin Heberling said.
“We were told this illness sometimes will show no signs until it starts to progress, and then it happens rapidly,” he said. “The heart valves harden over time until they don’t move well. It can cause a fatality. We were put on a list for an organ transplant. He was the highest level candidate. We were told Children’s Hospital in Pittsburgh was the best place to go.”
While waiting for the transplant, Jacob developed problems. Under stress, his other organs began to shut down, Martin Heberling said.
“He wasn’t eating. His liver became enlarged, that caused pain. He couldn’t sleep at night,” Martin Heberling said.
After this doctor’s office visit, his son was flown by medical helicopter to Pittsburgh. Both parents followed their only son in the family vehicle.
“It was painful,” Martin Heberling said. “We did a lot of crying, a lot of talking, praying. And there was a lot of silence, too. It wasn’t easy. When we got there, we met him in the hospital in his room. There were a lot of hugs and kisses. My wife wouldn’t leave his side.”
Doctors inserted a pacemaker to regulate Jacob’s heart. He wore a heart pump strapped over his shoulder. And he began a heavy regimen of medications, his father said.
“They were there three weeks,” Heberling said. “All the adjustments they made helped. He was starting to eat again. He was in less pain once that was controlled.”
In August, they brought Jacob home to wait for a heart. Kyle Heberling effectively became Jacob’s nurse, but a licensed nurse visited the home weekly to check progress.
When family medical leave ran out, Kyle Heberling lost her job, her husband said.
“We’re very upset. We’re scared,” said Martin Heberling, who works as a water operator for the city of Cleveland. “We don’t know what we’re going to do now. We’re down to one income and a son who needs round-the-clock care.”
The call of a donated heart broke through the routine about 6:30 p.m. Aug. 28.
“We had under four hours to make it to Pittsburgh,” Martin Heberling said. “It was extremely tense.”
Since the heart transplant, Jacob is on fewer medications. He’s working on physical therapy on an affected leg and toes.
“We’re hoping he’s home within three weeks or so,” Martin Heberling said. “He’s doing very well. We’re very grateful. Thank God. Thank them. Thank everybody for the prayers.”
After the surgery, the family learned four adult heart transplant patients died in a nine-month period because of complications from common mold, he said.
So this week, their home was tested. Molds were found because of leaks in a basement, Martin Heberling said.
Denando Dante, owner of M.A.D. Cleaning LLC, 1609 Campbell St. in Sandusky, said an indoor air quality and visual inspection confirmed presence of molds in the home.
Part of the problem is a bathroom fan that vents into an attic rather than outside, Dante said.
Because Dante’s daughter was hospitalized for four months and he understands what Jacob’s family is going through, he is donating his expertise and the materials to properly ventilate the bathroom and clean out the molds.
An electrician from C.T. Electric will install the bath exhaust fan, Dante said.
“We’re going to have a company come out and do post-testing to make sure the remediation is successful,” he said. “That way we can get clearance for Jacob to come home.”
David Kos, Avon Lake, said long-term friendships are making the difference through many activities at the bowling benefit at Park Lanes.
“This is to show them how much we care about them as a family,” Kos said. “We wanted to make this about the community and families.”
For the Oct. 10 benefit, the lanes fill on a first come, first served basis at $10 per person for one hour. The cost includes shoes. Four people bowl per lane.
People who cannot attend the bowling benefit, can help Jacob’s family in other ways. Donations to an account in the name of Jacob Heberling can be given at any Fifth Third Bank branch, Martin Heberling said.
A GoFundMe account created June 10 by Martin Heberling III so far received more than $25,000 of $80,000 for medical bills.
For a personal touch, get well or birthday cards can be sent to Jacob at P.O. Box 858, Amherst, Ohio, 44001.
Jacob reads every card, his father said.
“He is well aware of the support he has,” Martin Heberling said. “Very soon, he will be able to say, ‘Thank you,’ in person to some of these people. And my wife and I know, now, how important it is to be an organ donor.
“Registering to be an organ donor saves lives. Without that, we shudder to think how things would be. Thank you to everyone. We are so grateful.”