Pe Ell Family Hopes for Transplant for Toddler

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The first time you meet Zephyr Kaiser you’re immediately struck by his mop of almost white blonde hair, his big, curious brown eyes and his quick smile.

Then, you’re struck by how small he is. Parents Ari Trombley and Sam Kaiser said though Zephyr is 22 months old, he wears clothes sized for a 9-month-old. 

“I think if you saw him, you’d never known anything is wrong,” Trombley said. “His temperament is so good. He is the happiest baby.”

But it’s the little boy’s small size that’s a clue to the struggles of this Pe Ell family. Zephyr is living with four different heart defects, which make growing at a normal pace difficult. The conditions were first diagnosed about a year ago after Zephyr’s doctor heard a “gallop,” or irregular heartbeat, at a well-child checkup. In June, the family was dealt a larger blow when they learned that one of Zephyr’s heart conditions is not curable and he will need a heart transplant.

“It has to do with the physiology of his heart,” Trombley said. “So, he needs a new one to get all better.”

The news of Zephyr’s diagnosis and need of a heart transplant was a shock, but the family is slowly coming to terms and focusing on the road ahead. Their day to day life has become a blur of medical appointments. Zephyr has more than 10 doctors he sees as well as an occupational therapist. The family also must pay attention to strict physical restrictions, such as not holding him upside down or flipping him or allowing him to get too excited. And because Zephyr’s body uses so much energy living in heart failure, they must feed him a high-fat, high-calorie diet including adding avocado, pumpkin seed and olive oil to his formula bottles.

“It’s hard but it strangely becomes normal,” Kaiser said.

Trombley said the heartbreaking part about waiting for a heart for Zephyr is that the family is keenly aware that at his age and size, the only way for him to receive a transplant is for another family to lose a child. On top of that, infant heart transplants are an incredibly small percentage of overall transplants in America. 

Kaiser and Trombley know that Zephyr has a better chance of getting a heart if he can grow to be a bit bigger and that means a lot of waiting and worrying.

“Keeping him alive right now is basically our goal,” Trombley said. “It’s scary. One of the scariest things we’ve heard is no matter how careful you are … he could go into sudden cardiac arrest and be gone.”

A GoFundMe account has been set up to help the Kaiser-Trombley family with expenses related to Zephyr’s ongoing and future medical needs. 

The family does not know yet what the cost will be for a heart transplant if that opportunity becomes available to Zephyr but they already have large expenses related to his care now. Gasoline for trips to and from Zephyr’s many medical and therapy appointments costs them $400 per month. 



And with a rotating list of medications, they sometimes have to pay out of pocket (sometimes hundreds of dollars at a time) for a lifesaving drug and then wait to see if it will be covered by their insurance and they can be reimbursed. Zephyr also needs to use an oxygen monitor, which needs frequent replacement parts. And hospital bills have already piled up for the family.

“Because of his condition he has low oxygen and fluid buildup around his heart,” Trombley explained. “If he gets the sniffles or a cold or even if he is teething, he can end up in Mary Bridge for a week.”

Trombley is a student at Centralia Beauty College, where she is on hiatus until January in order to help care for Zephyr and also because she is recovering from a slipped disc in her spine from a recent car accident. Kaiser works at a PVC manufacturing plant, where he has maxed out all of his sick leave at work and will lose his job if he misses any more. 

“Everything snowballed this past year, our lives right now, it’s hard,” Trombley said.

Trombley and Kaiser are in a committed relationship, they wear matching black rings they chose for one another etched with a heartbeat design that Trombley said reminds them of Zephyr. But they said they cannot legally get married because it would decrease the already very small amount of medical assistance for which Zephyr qualifies. They said they have also begun selling what they can to cover their expenses. Kaiser used to build ambulances but recently sold the tools he used for that work. They said the work and stress is worth it if it can give their spunky and bright-eyed toddler a better shot at a healthy life.

“We don’t know what the future holds for him, we can’t, but we know we need to keep him as healthy as possible and keep him as stable as he can be for as long as we can,” Trombley said. “If we can keep him stable until he’s bigger, he has a better chance.” 

Despite their struggles Trombley and Kaiser said they are grateful to their community in Pe Ell who have rallied and continue to rally around them. 

Trombley said many local businesses have donation jars set out for them and over the summer a fund-raiser was held in Pe Ell to help them with their expenses. 

Trombley said the people of Pe Ell know them and they know and love Zephyr.

“We have a wonderful support network,” she said.

How to Help

Donations to the Trombley-Kaiser family can be made at gofundme.com/f/zephyr039s-heart-transplant