Efforts of parents, friends, a living kidney donor, Intermountain Sevier Valley Hospital Dialysis and Primary Children’s Hospital helps teen to return to “normal life”
Teenage years can be hard enough, but most teens don’t have to spend hours in the car hooked up to a machine just to stay alive. But one boy from Annabella, Utah, faced just that until he got help from caregivers at Intermountain Sevier Valley Hospital, Primary Children’s Hospital, and an altruistic kidney donor.
Henry Coulter was 15 months old when he got sick with pneumonia. He then developed the rare disease atypical HUS, a strep infection that typically affects children up to age 3. The childhood vaccine preventing the disease hadn’t been developed yet, and the infection attacked Henry’s liver, lungs, and pancreas, and put him at risk for stroke.
Henry got well, but his kidneys never recovered. He got a kidney transplant at age 2, with his dad, Matthew, as the organ donor.
The Coulters knew Henry would need a second transplant by the time Henry reached adulthood.
Henry’s kidneys steadily lost function as he grew. When his kidney function dropped to just 24 percent, doctors put him on the transplant list waiting for a deceased donor, as planned.
They hoped a donor kidney would become available in a year or so, without Henry needing dialysis.
Unfortunately, Henry got sick with flu last December. In January, on his first day of work as a lifeguard at the Richfield pool, he had intense stomach pain.
He ended up hospitalized, and in kidney failure. He left the hospital on dialysis and needed a kidney transplant within six months.
Dialysis required a 4 a.m. start to the day, three times a week, and drive to Intermountain Primary Children’s Hospital in Salt Lake City, 165 miles away from his town of Annabella, which has fewer than 900 residents.
Treatments impacted Henry mentally, educationally, and emotionally.
He couldn’t be in crowds and was frequently exhausted. He had to switch to online schooling. He was missing out on life and relationships. He couldn’t swim because of the dialysis catheter, and instead watched from the stands as his team competed in the state meet.
“Henry is an incredible young man, but having to travel to Salt Lake from Richfield for dialysis three days a week would take a toll on anyone,” said Stephanie Baker, dialysis supervisor at Intermountain Sevier Valley Hospital.
The Intermountain Sevier Valley Dialysis team wanted to help Henry get back to the life that he had previously enjoyed, so they went to work to make it happen. The hospital team coordinated with Intermountain Primary Children’s Hospital to bring pediatric dialysis to its campus
“Since he was only 16, we had to work with Intermountain Primary Children’s Hospital to obtain the equipment and training needed to provide dialysis care for Henry so he could receive treatment here in our community,” Baker noted.
It was a first for Intermountain Sevier Valley Hospital, and a success.
Henry was able to continue playing with his tennis team at South Sevier High, which lifted his spirits. Now, Sevier Valley Hospital will be a care home base for Henry and other children in the community who need dialysis in the future.
“We have had lots of ups and lots of downs throughout Henry’s health journey, and this year has had some amazing ups because of his organ donor and the pediatric nephrologists who have made sure he had all that he needed,” said Henry’s mom, Alisa Coulter. “I can’t say it enough, how much we appreciate them.”
“The pediatric nephrologists are more than just doctors to Henry,” she added. “They have known him since he was small. They joke and tease with him, and truly are a care team for him. They have literally revived him back to life, and had sleepless nights as we have called them for help, and kept him alive through many hospital stays. I’m so glad they were able to bring this level of care to Sevier Valley for Henry.”
Still, Henry needed a kidney transplant. Despite his community’s rally in search of a donor, there was no match.
But in a city 150 miles away in Draper, Utah, soon-to-be retired Army National Guard Major Monica Leger was looking for a child to donate her kidney to and help save a life.
Leger had been thinking about donating for about five years. And with her Guard retirement date in sight, she knew everything was aligning to make her wish a reality.
She approached the University of Utah to become an altruistic donor for a child.
“I had two kidneys, and I didn’t need both,” Leger said. “I donated because I could.”
On transplant day, Henry didn’t know who his donor was, or whether they’d ever meet.
He made a thank-you gift basket of the foods he wanted to eat post-transplant, like chocolate milk, potato chips, Takis and dried mangoes; the foods he was eating on the “kidney diet,” including Fig newtons, Cranberry Juice, and candy; and a personalized blanket.
Leger was in her hospital room after surgery, on her 45th birthday, when Henry’s gift arrived. Her birthday was now Henry’s transplant birthday.
“The retirement honors time, the birthday marks time, the kidney donation gives time,” Leger said. “I’m glad Henry will now be here to make those big lifetime decisions.”
Henry recalls waking up from surgery with a rush of energy he’d never experienced before. “I seriously I sat up and asked if I could stand up because I was feeling so energized, even after anesthesia,” he said. “There was no grogginess at all. It was crazy how different I felt with a working kidney.”
As fate would have it, Henry’s family and Leger have become friends.
In July, Henry celebrated his 17th birthday at Leger’s retirement party. Leger has challenged Henry to a push-up contest, reminding him that she gave him a great kidney that got her through two boot-camps and a couple of marathons.
Henry starts his senior year at South Sevier High this week, and is well enough to continue his athletic co-op with Richfield High, where he is on the swim team. The first week of August, he was healed up and safe to swim again.
He came back to the Lifeguard job he had for just one day before getting sick. He’ll have his first Richfield High Swim Team workout in September, which his mom calls his “full-circle moment.” His tennis game is getting stronger.
Now, he hopes his story can inspire others to become organ donors and save lives.
“Organ donation is safe, and the donor means everything to people like me,” Henry said. “It’s someone who would sacrifice some of their own body to help another person. Monica has been a big inspiration to other people – even my uncle decided to become an organ donor because of her. I just hope our story brings to light how much of a difference living donors can make to people who need it.”
To learn more about living kidney donation or become an organ donor, go to https://intermountainhealthcare.org/services/transplant/become-organ-donor.
About Intermountain Health
Headquartered in Utah with locations in six states and additional operations across the western U.S., Intermountain Health is a nonprofit system of 33 hospitals, 385 clinics, medical groups with some 4,600 employed physicians and advanced care providers, a health plans division called Select Health with more than one million members, and other health services. Helping people live the healthiest lives possible, Intermountain is committed to improving community health and is widely recognized as a leader in transforming healthcare by using evidence-based best practices to consistently deliver high-quality outcomes at sustainable costs. For more information or updates, see https://intermountainhealthcare.org/news.
