Local teen awaits a heart

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CINCINNATI — Hayden Weiskittel, 15, is like most other Anna High School freshmen.

He has Lego sets he likes to create things with. He enjoys playing with his two dogs. He loves video games and having fun on the computer.

There’s just one thing he’s missing: a healthy heart.

The son of Christa and Scott Weiskittel, of Anna, is on the waiting list for a heart transplant. He’s been hospitalized at Cincinnati Children’s Hospital since Feb. 8, but his heart problems date back to the day he was born.

He came into the world with hypoplastic left heart syndrome, Christa said. That’s a congenital heart defect in which the left side of Hayden’s heart was not sufficiently developed to function properly.

He underwent surgery within his first two days of life and another two reconstructive surgeries before he was 2. The procedures were designed to “make what he had work for him,” Christa said. He has two chambers in his heart. Most people have four.

“We knew eventually he’d be on the transplant list and now he is,” Christa added.

Hayden’s heart failure has been gradual throughout his 15 years. He’s always taken medication to maintain the organ, but the meds’ effectiveness began to diminish in October and that’s when his name was added to those of children worldwide who await new hearts.

“There are three statuses for organ donation. He was low (in status),” Hayden’s mother said. He began to take diuretics to counteract fluid retention. But in February, it was found that he was at the limit of diuretic therapy. He couldn’t take more without comprising his kidney function and what he was taking wasn’t working enough.

So, Hayden was admitted to Children’s Hospital and put on intravenous medication. That immediately bumped his transplant list status to the highest level. It also guarantees that he will remain in the hospital until the transplant can take place.

Christa spends weekdays with him. Scott is there for the weekends. Hayden’s sister, Madison, 18, visits once a week. Their older brother, Logan, 22, and in school at Bowling Green State University, makes the trek to Cincinnati every other weekend. Hayden doesn’t get to see his dogs.

But he does get to spend time with therapy dogs that go to his hospital room for a half hour each week.

His friends have made sure he doesn’t feel forgotten.

“Hayden gets a ton of cards and letters from people. It helps him feel connected to people,” Christa said.

“People are thinking about me,” Hayden said. They can write to him in care of Cincinnati Children’s Hospital, 3333 Burnet Ave., Cincinnati, OH 45229. Label envelopes “Patient Mail” to facilitate delivery.

Friends can follow Hayden’s progress on a Facebook page and there is a link to it at cotaforhaydenw.com. That’s through the website of the Children’s Organ Transplant Association, an organization that supports families’ fundraising efforts and provides guidance.

“I miss being at school and talking with my friends,” Hayden said. He works with a tutor for an hour each day and then completes homework assignments so he can stay abreast of his class. The tutor coordinates lessons with teachers at Anna High School.

“The school’s been wonderful, working with us to get things done,” Christa said. Hayden’s favorite subjects are science and history.

“History is easy,” he said in explaining why they’re his favorites. “And science is interesting, like atoms and molecules and symbols and all that.”

He had not participated in extra-curricular activities when he was at Anna, but in the hospital, he has learned to play chess.

“I might join the chess club (when I get back to school),” he said.

It will be awhile before that happens, even if a heart becomes available tomorrow. Following the surgery, Hayden will have to spend a week in the intensive care unit and then two more weeks in a step-down unit. After that, he won’t be able to go more than nine miles away from hospital for two months, as his cardiac care continues.

In the meantime, his days are busy. There are school and homework and fun with therapy dogs. And the model patient walks up and down hospital hallways three times a day. Three times weekly, he visits the cardiac rehab unit for exercising to keep his muscles fit enough to withstand surgery. He plays Uno and Battleship and Sorry with a hospital resource specialist.

And “not much else,” he said. “I’m waiting and hoping for that call to come.”

“Contrary to popular belief, waiting on the list for a transplant is not like taking a number at the deli counter and waiting for your turn to order,” says the website, www.organtransplants.org. “In some respects, even the word ‘list’ is misleading; the list is really a giant pool of patients. There is no ranking or patient order until there is a donor, because each donor’s blood type, size and genetic characteristics are different. Therefore, when a donor is entered into the national computer system, the patients that match that donor, and therefore the ‘list,’ is different each time.

“The other major guiding principal in organ allocation is: local patients first. The country is divided into 11 geographic regions, each served by a federally-designated organ procurement organization, which is responsible for coordinating all organ donations … contrary to the image of organs always crisscrossing the country, 80 percent of all organs are donated and used in the same geographic area.”

The Weiskittels wait in Region 10, comprising Ohio, Indiana and Michigan.

When Hayden was admitted to the hospital in February, doctors told his family that he would “have about a year,” Christa said. “IV medications have helped him feel a lot better. Obviously this is the place we need to be. We don’t dwell too much on what we’re missing. We look to the future.”

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By Patricia Ann Speelman

[email protected]

For information on organ donation, visit www.donatelifeohio.org.

Reach the writer at 937-538-4824.

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