Posted: Aug. 2, 2018 8:10 am Updated: Aug. 2, 2018 8:34 am
QUINCY -- Three childhood heart surgeries did nothing to slow down Eli Campos.
"Nothing has ever stopped him. He climbed a volcano in Scotland. He's run two 5Ks. He's never let his heart defect define him. He's always just been a normal kid," Eli's mom, Dawnall Haston, said.
But now the Quincy High School freshman who's all heart faces what could be his biggest challenge -- a heart transplant.
Eli, who didn't feel well enough to be interviewed, and his mom are in St. Louis Children's Hospital waiting for the surgery.
"It could be three to six months. It could be next week," Haston said. "I don't know if I want it to be in one week or six months. I don't know what the outcome's going to be. All I can do is have faith that it's going to be OK."
She has clung to that philosophy since Eli, the son of Haston and Jon Campos, was born with multiple congenital heart defects and Heterotaxy syndrome, in which the stomach, spleen, liver and gall bladder are in the wrong place. Surgeries at 1 week old, 3 months old and a month before his second birthday, and good results from ongoing tests, freed him to enjoy all normal childhood activities, and with his cardiologist's approval, indulge his love of riding roller coasters.
As he got older, he passed on some activities like soccer, realizing he didn't have the endurance for the game, but "he never wanted to be anything but a normal kid. And he is," Haston said. "He wants to go to school. He's interested in welding. He likes video games, like every other 13-year-old boy."
A transplant, while discussed since Eli's birth, was something seen as years down the road for the boy who turns 14 on Aug. 11. "He said to me, I knew this would happen, but I didn't think it would be this soon," Haston said. "I didn't either. He'd been doing so well."
Around the end of May, Haston noticed that Eli "looked a little blue-ish." Testing at Blessing Hospital showed lower-than-normal oxygen saturation in his blood, which sent him to Children's for more testing before coming back home.
"He never acted different. He doesn't complain," Haston said.
Three weeks later and still not improving, "he was really struggling to breathe," Haston said. "They stabilized him at Blessing, and Children's came to get him."
More tests in St. Louis found his liver and heart were failing and that his heart's tricuspid valve was severely damaged -- just since the May round of testing. Fortunately, his liver started to improve, taking away the need for a liver transplant.
"There's no fixing this. It's just going to progressively get worse until we have a heart transplant," Haston said. "The transplant sounds like such a great idea, but you're trading one set of problems for another. You have to deal with rejection, and on average, a heart is 10 to 15 years, so when he's in his 20s, we'll have to start thinking about what are we going to do."
Stabilized again after 30 days at Children's, Eli was sent back home to "have some normalcy" while waiting for a transplant -- this time with a continuous IV of medicine to help the pumping of his heart and a "life vest," an external defibrillator vest that would automatically shock his heart if it went into a dangerous rhythm.
He had good days, even meeting with Superintendent Roy Webb and talking about the start of the school year. But a week ago, he could barely get out of bed and wasn't eating or drinking. Haston moved up an appointment in St. Louis, and doctors put Eli back in the hospital to wait for a new heart.
Because of Eli's previous surgeries, Haston said the transplant will be more difficult than most. But Eli's already decided he wants his old heart to go to scientific research to help other kids with heart problems.
Janice Rumsey, Haston's mom and Eli's grandma, said knowing somebody else is giving up their heart bothered Eli. "We had to explain to him that they were a hero. People that donate organs help save kids like him," Rumsey said.
"We do plan on contacting the donor's family and allowing them to be involved in Eli's life in some way if they would like to," Haston said.
Family, friends and co-workers -- Haston is a registered nurse at Hannibal Regional Hospital, and Campos, also a nurse, works at the Adams County Health Department -- have provided support for the family. "People I don't even know have been so supportive, even just prayers and thoughts. We said when Eli was put on this earth, he's going to touch a lot of people, and he already has," Haston said.
But it's been tough for the family with Haston not working to care for Eli. Rumsey has started some fundraising for the family, and Haston provides online updates on Eli at facebook.com/EncouragingEli/.
"Everything he went through years and years ago seems so insignificant compared to now," Haston said. "You always think you'll get used to it, but I think it's harder when they're older. I've had him for almost 14 years."