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For 6-month-old who needs heart transplant, life hangs by a thread

By David Self Newlin | Posted - Jul 2nd, 2013 @ 2:26pm

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SALT LAKE CITY — Josh Wood hung up quickly during our phone interview when the doctors called him downstairs to talk about his ailing son, Kelsen. As it turned out, the 6-month-old boy's chest was filling with blood. In the previous two weeks, he had suffered cardiac arrest and a collapsed lung — twice. So when the doctors call, there's no more time to talk to reporters.

No one is sure exactly what has caused Kelsen's illness, but the doctors do have a name for it: dilated cardiomyopathy. Kelsen's heart is too big. So big, in fact, that its muscles keep getting thinner and thinner, less and less able to pump blood efficiently, according to Wood. It's become so bad that there's only one option: a heart transplant.

“The little guy's had a tough little life so far,” Wood said.

Even before the heart problems, Kelsen was no stranger to a hospital room. Early on, he was diagnosed with a case of thrush. Then, when he was only 3 months old, doctors noticed he had cataracts in both eyes, according to Wood. Surgeons removed them, and Wood now has to put contacts in his infant's eyes so he can see.

But it didn't end there.

“We thought that was pretty tough, and then we kind of got hit with this,” Wood said.


About two weeks ago, Wood, a 27-year-old quality supervisor for ClearLink in Salt Lake City, and his wife, Nikki, a 26-year-old hair stylist, were at a family cabin in the Unitas when Kelsen started acting very sick. He was throwing up and developing purple lips. They rushed him to a hospital in Evanston, Wyo., where doctors were baffled by what was going on. They sent the family down to Primary Children's Medical Center in Salt Lake City.

It was there that doctors discovered the big problem: Kelsen's heart was two to three times the size it should have been. It could have been caused by a virus, a genetic disorder or something else, but doctors aren't sure, according to Wood. They just know Kelsen's heart isn't able to pump blood anymore.

Shortly after discovering the dilated cardiomyopathy, baby Kelsen went into cardiac arrest. Physicians and nurses spent a desperate half hour stabilizing the boy and getting him on life support, according to Wood, all while his parents watched, trying to wrap their minds around what was happening.

“That was a pretty tough experience,” he said. “Definitely the hardest time in my life.”

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Kelsen has since been put on a transplant list, and there he will stay until a heart can be found for him. That could be as quickly as a month, but it could also be up to a year. During that time, Kelsen will remain in the hospital, according to Wood, where he is currently attached to a Berlin Heart, a small, semi-portable form of life support that keeps his heart pumping for him. It's a device approved for use only on children who are in need of transplants.

Life for Kelsen and his parents has become a waiting game, combined with a fight to keep the boy in stable condition. It's things like the sudden internal bleeding that cut his interview with short that that keep the stress level high for the Wood family, despite their equally high hopes.

“We could be waiting not very long, or we could be waiting quite a while,” he said.

Friends and family have stepped in to help. For now, the Wood family's insurance seems to be covering hospital costs, but after any transplant there are substantial additional costs. Kelsen will be taking 10 to 15 medications daily for the rest of his life.

Layne Jenkins, a close friend of Josh Wood's, has stepped in to help raise some funds. He is studying recreation management and has been using the skills he's learned to get the word out, putting together a 5K, yard sale and benefit concert to help with medical bills.

“I'm using my education to the best of my ability,” Jenkins said. That 5K will be held Aug. 31 in Bountiful.

Kelsen has a long road ahead, but the Woods are confident in his recovery, and that things will change for the better sometime soon.

More than that, they're very grateful for all the help they've received, and emphasized that they're not the only ones in the same boar — some have it even worse. They'd like to do everything they can to give back, given how much they've received.

Wood asked those who want to support them to not only donate, but to give blood, to donate to the Ronald McDonald house that provides rest and food for them and many other families at Primary Children's hospital, and support those who are in similar situations but don't have as much support. They also expressed thanks for all the doctors and nurses who have played such a vital role in keeping Kelson's heart pumping, artificial or otherwise.

All the Woods can do now is try to contemplate the future.

“We're just trying to figure out, get our heads around it, wrap our minds around what's happening," Wood said.


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