His parents remember three-and-a-half-year-old Jack Corbo as a fighter, who never had a fighting chance.
Jack was a twin, born premature. He developed an infection shortly after birth that damaged his heart.
And while he received his first transplant quickly, the replacement heart was bad, too. The donor heart came from another premature infant who had been beaten to death, his ribs crushed. Repeated attempts at CPR had failed. But doctors flew that heart across the country from southern New Mexico to the Twin Cities and they implanted it in Jack.
His parents remember the cautious approach after that first transplant. They remember the concern of the medical staff who talked about how Jack's new heart was "a little stiff...not squeezing as well as it should be." His father remembers being told it was "probably because it's been in a bucket of ice for 4-5 hours."
Medical records show Jack's donor heart never worked very well. He required a pacemaker by age two - and that failed. Doctors cut him open again, by age three to repair the pacemaker. And it was then they realized he would likely need yet another heart transplant.
His mother and father talked about their conversation with Jack's surgeon after the repair of his pacemaker. Todd Corbo remembered her saying she'd taken a live wire and scratched it across the top of Jack's heart and it wouldn't pace at all. He remembered the doctor saying, "This heart is done."
Having spent nearly half his life in the hospital, by the age of three, Jack's family was eager for him to wait at home. It's not uncommon. Some doctors tell us it's even a good idea.
Kids like Jack on all the meds needed to keep his heart beating are severely immuno-suppressed. His mom said she feared he'd be in the hospital with "no immune system to fight anything off."
Jack's condition was always fragile. While he qualified, under national guidelines for a "1A" ranking, the highest ranking for those needing a heart, The University Children's Hospital, Fairview ranked him lower.
He stayed ranked as a 1B until his parents agreed to move him into the hospital - a decision his family now regrets. But his mother remembers the pitch for Jack to be hospitalized, well. "He's strong now, he's healthy," she said she was told, "Let's get him in here and get him a new heart and be done with it."
The family agreed to hospitalize Jack for the specific purpose of upgrading him on the list. And they say he did relatively well much of the time he was there.
His father, Todd, insists the only reason they were in the hospital was to attain the 1A ranking. "The kid is bouncing off the walls," Todd said. "He had so much energy."
But while hospitalized medical records show Jack contracted two infections, "Influenza B" and a bacterial infection known as "Enterococcus." Normally found in human feces, records show Jack's infection was traced to the PICC line inserted in his arm by hospital worker.
But the family says they stayed with the hospital, believing his higher ranking would expedite his transplant. It turns out, there was a lot they didn't know.
Through the course of the KARE investigation, the family came to learn that even when Jack was admitted to the hospital, he was repeatedly being downgraded again. And some of those downgrades were curious like, Valentine's Day and the U of M's Spring Break.
After months of pushing for answers, the hospital administration now confirms Jack was being downgraded to accommodate his doctor's vacation and the business travel schedule of his doctor.
This issue of downgrades due to staffing issues is a problem beyond just University's Children's Hospital. It's also an issue in other heart transplant centers, nationwide.
While the hospital says it's their policy to inform families whenever a child's ranking is changed, the family insists they were never informed that Jack was being downgraded to accommodate the vacation schedule of medical staff.
We consulted with medical ethicist Arthur Caplan, who sees the circumstances in no uncertain terms. "You don't play with a child's medical condition when there's been no change in the child's medical condition," Caplan said. "Manipulating a child's medical status because of factors that have nothing to do with the child and everything to do with the staffing is not the appropriate way to go."
Our investigation also revealed at least one occasion where the hospital simply forgot to keep Jack on the 1A list. That top-tier ranking is a precious thing. It has to be maintained. If there's not someone at the transplant center keeping the child current, the United Network for Organ Sharing will automatically remove the child from the 1A list -automatically downgrading the child.
That's what happened to Jack on April 7th, this year. He was in bad shape at the time, just a week before he would die. It took 12-hours before someone realized what happened and moved him back up the list. While that may not seem like much, nobody knows when a child's heart will become available.
The spokesperson for the University Children's Hospital, Fairview takes issue with the idea that the hospital simply "forgot." Dr. Bobbi Daniels told us, "To imply that it's carelessness, I think, is a little different than my understanding of the thought and counsel that's taken as the team decides what the appropriate status is."
But others who have looked at the record tell us it's disconcerting to see a child automatically downgraded, as was the case with Jack, on a pre-determined clock. Clearly, if he'd been downgraded for some serious illness, he would not likely have been upgraded again within 12 hours.
In a letter to the family, University Children's Hospital, Fairview takes no responsibility for keeping Jack on the list. They blame his downgrade on the national transplant office and their automated system for the downgrade.
Jack's father acknowledges, "Even if everything would have gone right, and they would have followed all the UNOS standards, I don't think there's any guarantee Jack would have gotten a heart. But the fact that things did not go right, that he was downgraded in his status when he should not have been, those things all led to the fact that he was put in much more jeopardy," he said.
KARE Television asked UNOS if a heart was ever available for a person the size and blood type of Jack, during the time he was on the list for a heart at the U of M. They said yes.
According to UNOS, in both January and April this year, there was "potential for a (heart) to be offered to a 1A candidate at the University of Minnesota Children's Hospital prior to the actual recipient." In January, Jack wasn't listed as 1A. He had been downgraded for RSV, a viral infection, essentially a bad cold. In April, he was ranked 1A. We do not know why he didn't get that heart.
University Children's told the family there was only one viable heart for Jack when he was on the short-list for a transplant. He was the fourth person in line. He did not get it.
His parents knew the tough fight Jack faced, but they believe "if anybody could do it, he could do it." They believe, in the end, he was exhausted by a weak heart and his long wait.
His mother, Robin, remembers arriving on the hospital the last day of Jack's life, having been called in by her husband because it was becoming harder and harder for Jack to breathe. She brought his brother; Jack's twin Cooper, with her. And Cooper called out to his brother, "Keep fighting, buddy!"
But over the course of the next few hours it was clear that it was the end for Jack. The medical team had put a machine on him for extra pressure on his lungs. Jack, seemingly wanted no more. He called out, "All done, momma, all done!" His mother said she knew it was over.
She knew Jack could hear the team talking about intubating him again and putting in the chest tube. She believed Jack just didn't want anything else to do with the long and protracted battle that had become his life. He "coded" - his heart stopped beating - and the team worked frantically to bring him back. They did, but within 20 minutes he was in trouble again. He "coded" twice more.
Eventually, his father remembers one of the primary doctors at the scene coming up to him and Robin to say, "We're at a point where we can't do anything more for Jack. We're just doing things to him and you need to tell us when to stop."
His mother says she'll be "forever grateful" that she and her husband were the last people to hold him. "They turned off the machine, and he died in my arms," Robin told us.
The Corbos wanted their son's story told as a way to, "try to remedy or try to fix a wrong so this doesn't happen to other people."
(Copyright 2008 by KARE. All Rights Reserved.)