LEHI — Shawn and Kim Stinson seemed to have everything going for them last summer. They were in their late 20s and had just bought their second home in Lehi. They had three children, all of them so healthy they’d never had so much as an ear infection. Shawn, an account manager for Domo, had just received a promotion. They were saving money and planning for the future.
“We were living the dream life,” says Shawn Stinson.
Then they took their infant, Beckett, to the doctor for his 2-month checkup in October and life turned into sleepless nights, medical procedures, hospitals, PICC lines and constant, gnawing worry and stress. Beckett was diagnosed with billary atresia — the liver doesn’t function properly.
His life depends on receiving a liver transplant — from a pediatric donor. That leaves the Stinsons to confront a terrible dilemma, the kind that keeps good people awake at nights: For their child to live, another must die.
If he were larger and stronger, Beckett could receive a piece of an adult liver, but under the circumstances he needs a liver from a live donor, one who doesn’t weigh more than 55-60 pounds and whose grieving parents are willing to donate the child’s organs.
“Shawn and I have talked a lot about this,” says Kim Stinson. “In order to get a liver, someone else would lose a child. It’s really hard. There’s a lot of guilt. How can we accept that? The parents of that child love their child as much as we love ours. We finally concluded that what’s going to happen is going to happen and we’ll be forever grateful for those who make that hard choice.”
Says Shawn: “When we pray at night that Beckett gets a liver, we know exactly what we’re praying for — someone else will lose a child so Beckett can live. That never sits well with us. We decided we can’t pray for that. We pray for the family and what they will be going through. We want them to feel peace from heaven.”
The liver is the second largest organ in the body. It performs several functions, including filtering the blood of toxins and processing food and drink into nutrients. According to the American Liver Foundation, there are more than 6,000 liver transplants yearly. Those waiting for a transplant can go on liver dialysis, but it is only a temporary solution. Living donors can provide a portion of their livers, which then grow to the size required by the recipient’s body, but most donated livers come from people who died recently with no damage or disease to the liver.
Beckett weighed 8 pounds when he was born; 10 months later he weighs just 13 pounds. His liver cannot process nutrients, which is why he is underweight even though he is fed 24/7 through a tube directly into his abdomen.
Last week he took a turn for the worse and was hospitalized. Doctors decided he will remain in the hospital until a donor organ can be found.
According to the liver foundation, more than 16,000 people are on the waiting list for a liver transplant. The sicker the child, the higher up the waiting list he moves, thus creating another dilemma.
“We need (Beckett) to get worse so he’ll move up the list,” says Shawn, “but we need him to be healthy and strong enough to survive the transplant surgery.”
Beckett’s turn for the worse moved him up the list, but it came with a price: pain and discomfort.
“He’s very irritable and not sleeping well,” says Shawn.
The Stinsons received more bad news last week. They have bonded with a couple of families who also have infants who need transplants. One of those children died last Monday night.
“That’s been hard,” says Shawn.
In response to an obvious, but unasked question, Kim says: “Yes, I would donate my children’s organs. Before this I would have struggled. Now that I’m going through it, obviously my viewpoint has greatly changed.”
“When we started on this journey we decided we want to do three things,” says Shawn. “Help spread the gospel of Jesus Christ, raise awareness for organ donation and assist other families in our situation.”
Beckett has undergone a number of procedures. At 2 months, a hole was cut in his liver, and his intestines were “rearranged” to provide a drain for the toxic bile. Since then doctors have drained pockets of potentially toxic fluid in his abdomen about a dozen times. Beckett’s damaged liver puts stress on other organs as well — in his case, he has problems with his kidneys and heart, as well as neurological issues and severe jaundice, the buildup of toxic bile in his system which seems to rise almost daily.
He is not developing normally while his body deals with a failing liver. He doesn’t even crawl or sit up, nor attempt to speak.
“Our other kids walked at 9 months; we’re happy if he lies on the floor and pops his head up,” says Shawn.
Neighbors and friends have rallied to help the Stinsons. Their neighborhood, with an assist from firefighters and University of Utah football players, organized a fundraiser to offset medical expenses, including a dinner and a carnival. Others have reached out individually, some of them strangers.
“People have reached out with love and support and prayers that we feel outweigh any amount of money that could be raised for us,” says Shawn. “Yeah, the money helps. It’s a burden we don’t have to worry about. It’s allowed us to focus on Beckett and our other kids and each other.”
“We’ve been overwhelmed with support from people,” says Kim. “It’s showed me how many beautiful people care. Christmas was huge. We received packages full of things for our daughters. The girls’ faces on Christmas morning … there were so many presents, from other people.”
The Stinsons’ routine is stressful and demanding while they endure the longest of waits for anxious parents. Shawn and Kim take turns staying with Beckett at Primary Children’s Hospital; one of them is always there. Shawn continues to work, even when he’s at the hospital. One minute a doctor is telling him about heart and liver issues and another minute he is on a conference call making sure clients are happy.
“I’m on the anxiety diet,” says Shawn. “It’s just this constant weight, this constant pressure. We’re always exhausted. The longer this goes on the harder it is to get out of bed in the morning. We could sleep all the time if we were allowed to.”
For her part, Kim says: “I am feeling mixed emotions. I feel scared and nervous for what is happening, but at the same time I am really at peace. We have a lot of people pray for us and I feel their prayers. I feel lifted up. I feel OK. I look at Beckett and feel like he’s going to be fine.”
Email: drob@deseretnews.com