'The biggest gift': A toddler's journey to a life-saving liver transplant
Liver allocation equity is not a problem only adults face, but children as well. Every year 50 children die waiting for an liver transplant. 2-year-old Charlotte Felt was unable to receive a liver transplant from another region despite her failing condition. Thankfully, after a year on the wait list Charlotte received the liver she needed.
The following article shares the story of Charlotte Felt’s live transplant journey
'The biggest gift': A toddler's journey to a life-saving liver transplant by Molly Shen
SEATTLE -- Janessa Felt doesn't keep track, but she guesses she's been to Seattle Children's Hospital more than 100 times.
The visits began shortly after 2-year-old Charlotte's birth.
"We've come for labs, ER visits, hospital visits," Janessa said. "It's part of her life and family almost."
Diagnosed with biliary atresia shortly after birth, Charlotte's liver doesn't work correctly.
She had her first surgery at just 9 weeks old and did well for more than a year.
But problems with her liver function surged again, and last May, doctors put her on the transplant list.
"It gets more concerning as the time goes on," Janessa said. " We all hope it will happen so soon and so quickly, even though we know the reality is, it probably will not...and it's hard."
It's hard on Charlotte. Juandice turned her eyes and skin an unnatural yellow. Even her hair has an unusual silvery tinge.
Her belly is swollen with fluid. Her only cure is a transplant.
So Charlotte sits on the waiting list where she competes not only with other children who need a liver, but with adults.
"Even very, very sick children nationally wouldn't have access to an organ from a child that is in an other region," said Dr. Evelyn Hsu, Seattle Children's Medical Director of Liver Transplantation. "All the adults in that region would be transplanted before a child would from a neighboring region."
Dr. Hsu is at the forefront of trying to get the system changed so children are prioritized for organ transplants.
"We can assure that all children in the nation get the transplants they need without really adversely affecting the adult mortality on the wait list because there are so many adults getting liver transplants," Hsu said.
She says 50 children die every year waiting for a liver, and Charlotte is getting worse.
After bouts with fevers and discomfort, Janessa took Charlotte to the emergency room at Children's. Doctors decided she needs constant hospital care until she receives her transplant.
"For her to have this total backslide, it's scary," Janessa said.
Janessa knows they're waiting for a gift to come through someone else's death.
Last fall, her oldest daughter's dad, Calvin Lynch, died suddenly. He was an organ donor.
"It was one of the hardest things for us to sit at that hospital while they got all of that ready and to watch him go through that. It was very hard. But it is absolutely what he would have wanted, and it is an amazing gift," she said.
Calvin was able to donate his heart, a kidney, and his liver.
His liver wasn't tested for compatibility with Charlotte because they weren't blood relatives and because of where she was on the waiting list at the time.
This family knows what it is to give. Now they wait to receive.
And finally, word comes. Exactly one year to the day since Charlotte went on the transplant list, she has a match.
"I don't think I've ever had something so amazing happen in my life," Janessa said just before sending Charlotte to the operating room.
It was a needed gift from someone who said when they died, they wanted to be an organ donor.
The surgery took nearly 12 hours.
When it was done, tiny Charlotte was hooked up to machines and tubes, but her color was returning to normal.
And it wasn't long before she was back up, eating, smiling, and going home, ready for whatever life brings next.
"It's the biggest gift you can give somebody. A 2-year-old that's gonna have a full life because of that gift of donation," Janessa said.
In 2018, 6,900 people were living organ donors, and a record setting 10,700 people who died were able to donate organs. But it wasn't enough. Right now there are nearly 114,000 people across the country on an organ waiting list.
You can register online to donate life. You can also make a note on your drivers license, and be sure to tell loved ones about your wishes.