On her 45th birthday, Monica Leger was handed a gift basket from a stranger that contained an odd assortment of items: Takis, chocolate milk, potato chips, dried mangoes, Fig Newtons, cranberry juice, candy, a keychain and a blanket that said “Henry.”
Leger, then a major in the National Guard, started sobbing when she saw the name. It was among the greatest gifts she’d ever received.
Still, it was hard to compare it to the gift she’d given Henry, who she would later learn was a 16-year-old from the tiny town of Annabella, Utah.
She gave him back the remainder of his childhood, his sociable senior year of high school, his ability to join the swim team, good health and hope. She gave him time.
She gave him one of her kidneys.
A destructive illness
When Henry Coulter was about 16 months old, he got pneumonia and due to complications, he lost kidney function. His parents, Matthew and Alisa Coulter, were 12 weeks pregnant with their second child when Alisa went with Henry by LifeFlight air ambulance to Intermountain Primary Children’s Hospital, where he spent 10 days in intensive care then a couple of months in a regular room. So he first experienced dialysis as a toddler, with a brief break when his kidney function seemed to improve. It didn’t last.
Then he got sepsis from his dialysis catheter and was back in the hospital, mom at his side, dad working and finishing up a bachelor’s degree in biology and premed back home in St. George. Doctors said it was clear baby Henry would need a new kidney, though they still had a little time and a fair amount of paperwork to do.
In January 2010, Matthew Coulter gave his boy one of his kidneys.
A series of ups and downs
Things were going really well for the Coulters and Henry was doing much better. They moved to Glendale, Arizona, where Matthew had been accepted to medical school. They had more kids in a family that would eventually include five. But all transplant patients are immune-compromised by design, taking immune-suppressing drugs to keep their bodies from rejecting organs that weren’t originally theirs. That makes the organ recipient vulnerable to infections and illnesses and kids naturally catch bugs. Henry got sick quite a bit.
With all that going on, Matthew Coulter extended his medical school education a year, but was struggling and anxious as he and Alisa tried to keep all the balls they were juggling from hitting the ground. Then they learned that when he’d extended his med school graduation plans, he lost housing benefits. They couldn’t afford market rates while he was in school, so Alisa took their then-three kids back to Utah, while he tried to finish up.
Meanwhile, Henry got the BK virus — which most people shake off but is very dangerous when your immune system is weak. Doctors stopped some of his medications so his immune system had a chance to fight it. That, in turn, led to partial organ rejection. Although he recovered, the kidney was damaged. Then he got a lung disease that reduced his lung function to about 40%.
By then, Henry was in third grade.
Matthew decided family was much more important than medical school and his family needed to be together; he withdrew from college.
He got a job offer to teach science in Florence, Arizona, south of Phoenix. And Henry did all right for quite a while, going to school when it was possible, doing home schooling and online school when it wasn’t. He was becoming sick more often, though. His kidneys were inflamed and he needed high-dose steroids, but he wasn’t feeling better. They’d known for a while he would likely need a new transplant before he reached adulthood. They were hoping to have some time.
Then a crazy thing happened, Matthew Coulter said. The house right next to Alisa’s parents, Collin and Laurie Rose, in Annabella, Utah, population 872, became available in 2022. It felt miraculous: A house they could afford in a state they loved with people who were also beloved and could take some of the juggling pressure off by simply being near. So they moved again.
Henry’s school was South Sevier High School. Mostly. He was into swimming competitively but the school doesn’t have a pool or team, so swimmers from South Sevier spend part of their school year at Richfield High during the winter swim season. It’s a juggle, but it worked for Henry and other swimmers.
Plus the teen, who is described as incredibly sociable, got to make twice as many friends while going to two schools.
But on Dec. 22, 2023, he caught the flu and was once again very sick. He’d long had the lung issues and was immune-compromised. When he got the sapovirus, a gastrointestinal illness, the kidney his dad gave him as a baby was pretty much done. By late January, he was back on dialysis.
Dialysis closer to home
It was Alisa Coulter who decided to ask Intermountain Sevier Hospital in Richfield if they could please, please, please dialyze Henry there. They’d been driving three hours each way, getting up at 4 a.m. on Mondays, Wednesdays and Fridays to make the trek to Primary Children’s Hospital in Salt Lake City, where the teen spent 3.5 hours in the dialysis chair having his blood cleaned of toxins before undertaking the three-hour trip home. It didn’t leave much time for school or sports or socializing. He was missing important moments of being a kid. Richfield was just a few minutes away.
His parents were nearly as exhausted as he was.
Stephanie Baker, a registered nurse and the dialysis supervisor for the Intermountain Sevier Valley Hospital dialysis center, said the medical team was used to dealing with adults, but they pondered Henry’s request only briefly before deciding to try to help. They decided that he was old enough — and grown enough at 6-foot-1 and 130 pounds — that they’d see what they could do. And the dialysis team at Primary Children’s was more than willing to help.
So the dialysis center worked with Primary Children’s to coordinate and make sure they had the equipment they needed before taking over his actual dialysis under the direction of the pediatric specialists. It’s likely, Baker said, that will open the door to other local teens should the need arise. They’re not going to take on small children, but Henry was proof that older pediatric needs could be met.
He started dialysis at Sevier in mid March as a bridge to transplant, still coming in at 4 a.m. as soon as the center opened for his treatment. But eliminating the car trip gave him back four hours of life a day to be a teenager, though not always a healthy one.
All for one
Matthew and Alisa Coulter had decided that one of them would stay home with the kids and the task would depend on who got a job first. Alisa won that race and is back to work as a visiting Head Start educator, working with families with children ages prenatal to 5.
Matthew’s enjoying time with his children and notes that when a child has severe illness, the healthy ones sometimes get moved aside to take care of a one with really serious needs. He and his wife are fans of how their children have risen to the occasion.
Kiera, 15, will help with whatever the family needs and “kicks into overdrive when Henry is in the hospital. She worries about him a lot when he’s sick. She has gone to a lot of basketball games and track meets alone because of his dialysis schedule, but doesn’t complain,” Matthew Coulter said. “She always wants to make sure people are happy.”
York, 11, sometimes complains that Henry gets all the attention. And Henry gets out of some chores, too, while York ends up helping with siblings and around his grandpa’s farm, building fences and bailing hay. He’s been tending to his grandpa’s pigs and chickens, rabbits and dogs, helping in the garden, and mowing the grass while Henry has been gone.
The little guys get more of the fun and less of the actual work. Declan, 5, has a case of Henry worship and “will get Henry whatever he asks and will lie for him,” Matthew Coulter said. The little boy tries to build a relationship with his big brother through things like Xbox. A great reader — he’s well ahead of his age and reading at a second-grade level — he narrates while Henry plays video games.
Quinton, 2, gets sad whenever Henry and his dad have to go to the hospital, but he chimes in — literally and loudly – whenever a machine alarm sounds: “Henry, your medicine.”
A community tries to help
The community has tried to help, too.
Annabella is a small town, so it wasn’t hard to spread the word that Henry needed a kidney and if anyone wanted to be tested to see if they were a match, they could fill out a form online. Meanwhile, the teen got a stomach bug that put him in the hospital for dehydration — he couldn’t keep anything down. His kidney — and his family — had gone as far as they could without major outside help. There were folks around willing to donate the organ and who got tested, but they didn’t match.
Family members didn’t match either, though Matthew’s brother Andrew ended up matching with someone else who needed a kidney, so he donated one of his.
They needed another miracle.
The miracle’s name, of course, was Monica Leger.
Leger had considered donating a kidney for years, but couldn’t donate to a nonrelative as long as she was in the military. But with her retirement planned and fast approaching, she couldn’t stop thinking about it, she told her husband, Travis Scroggin. One night, close to midnight, she couldn’t sleep, so she filled out the online inquiry form.
She wanted to donate a kidney to a child at Primary Children’s if that was possible, though it was not as simple as just wishing it. Donor and recipient had to match, as did the timing and other factors. It was a long process that included many months of testing to make sure her kidney was suitable. Finally she was cleared to donate, but still lacked a match.
It was also a pretty sterile, anonymous process that took about six months. Then she learned she’d be donating to a 16-year-old in Intermountain Primary Children’s care.
“I couldn’t believe that had worked out,” she said. “I knew that was long odds.”
She was told he’d had a difficult time finding a match because of some antibodies and would reject the vast majority of donors even if they matched in others ways. But he matched Leger.
She chose to donate on her birthday, which was a Friday. That worked out, too.
The one disappointment was she wanted to meet the boy and his parents, if they wanted to meet her, preferably while they were in the hospital. But that shroud of secrecy surrounding organ donation prevented that, which was frustrating to both families, anxious to meet. They did bend the rules enough to give her the gift that Henry had made for her.
When they met, he was back in the hospital, his dad by his side. He’d gotten sick again. In mid July, they all met for a picnic, which was a lot more fun. She loves meeting his whole family, including the “11-year-old brother who was taller than me,” Leger said.
Before the surgery, she wrote a letter that was never delivered, promising she wouldn’t back out; her kidney was his. She figured his family was a bit terrified that a stranger would change her mind.
She’s retired now, but only from the military. These days, she works for an insurance company, investigating fraud. And she feels as good as ever.
Henry moving forward
Matthew Coulter describes Henry as a fighter — and sometimes he does it for the sake of fighting. “He loves arguing with us,” he said, a smile in his voice, “but it’s part of what’s kept him going. He would not be around if he wasn’t like that. He’s just a really good kid. He hates that he’s different from people because of a kidney, so he doesn’t ever let it be an excuse. He plays sports and when he does, he goes all out.”
He got sick on what was his first day as a lifeguard. And when he was on dialysis, he wasn’t allowed to swim because of the catheter. The journey has been filled with disappointments, but he has never made excuses. His folks say he’s always done what he could, even playing tennis and soccer in school.
Since the transplant, Henry’s life is going swimmingly. Thursday, he started his senior year. He has a job again as a lifeguard in Richfield.
While much of the journey has felt like an uphill battle, Alisa Coulter described the past year as “pretty cool” in the way things have aligned. There’s the house and her parents next door, happy to walk down the path to help out if needed or just be there for love and support. There’s the decision to dialyze Henry in Richfield, which removed so much pressure and gave the family some breathing room for the rest of the get-Henry-well battle. And there is, of course, Leger, who maybe saved all their lives a little bit, not just Henry’s.
At the picnic where she met his family, Leger told Henry quite seriously that she gave him a great kidney: It served her well in two boot camps, as a police officer, and during two marathons.
That gift basket she was given, by the way, was carefully curated to include things Henry was not allowed to eat, wished he could eat and had been forced to eat perhaps too often.
In yet another coincidence, Leger retired from her 21-year military career (part of it in the Air Force) on a day in July that happened to be Henry’s birthday. Instead of hanging out with friends, he went to his new friend’s retirement party; she’d entered at the lowest rank possible and left a major. After all, Henry told her, she’d spent her birthday having an organ removed to change his life, back when they were strangers.
“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.”
They are half-joking, half-serious when they discuss having a pushup contest when he’s completely well. The tough military woman and the boy who has fought hard just to live.
They think it will be pretty even. He has youth on his side, she has years of training and exercise and they have a perfectly matched pair of kidneys.
