The University of Minnesota Hospital has a long and glorious history in cardiac care and heart surgery. The world's first "open-heart procedure" was performed here.
Medtronic founder Earl Bakken invented the pacemaker, while working with surgeons at the University of Minnesota. And while the first transplants happened in other parts of the world, they were performed by men trained at the University of Minnesota.
Today, the University of Minnesota Children's Hospital, Fairview is the only place in the Twin Cities where children can receive life-saving heart transplants. But our investigation finds them increasingly uncommon.
In a telling example of the current state of affairs, according to UNOS (the United Network for Organ Sharing, which manages the national list for transplants) just three children came off the list of those waiting for a heart at the U of M Children's Hospital this year. One of them was transferred to another hospital. The other two died. Nobody was transplanted.
In our previous stories, we told you about Abby Ostlie - a five-year-old girl who waited here more than a year for a heart transplant. Her family and their doctor say University Children's Hospital ranked her too low on the national list for a heart. Nationally, she qualified for the highest ranking available, 1A. The hospital ranked her 1B. It's a significant drop. We checked.
Between the spring of '07 and the spring of '08, not a single child (between the ages of 1 & 5) was transplanted in our region (Illinois, Wisconsin, Minnesota and the Dakotas) if they were waiting on the 1B list.
Abby was ultimately transferred to a hospital out-of-state. Her status upgraded, she received a new heart within weeks.
We also told you the story of Jack Corbo. He died earlier this year after waiting for a heart at University Children's Hospital, Fairview. Jack had been on the transplant waiting list from August of 2007 to April of 2008. On about 50 of those days, he waited on a downgraded list. His family says they had him admitted to the hospital for the specific purpose of a higher-ranking. And to this day his mother insists had he not got into the hospital, "he would still be alive today."
Dr. Bobbi Daniels is the Chief Medical Officer of the University of Minnesota Physicians, which staffs University Children's Hospital, Fairview. She defends the institution saying, as a group they "care." She talked about the long heritage of heart surgeries at the U of M, and how it's considered "one of the pre-eminent institutions in the country."
We asked her what's been happening lately with fewer transplants being done. She told us the real problem here is a lack of available organs for children.
But our investigation found, not only has the U Children's Hospital been requiring hospitalization for the highest transplant ranking, but they've downgraded children again, even after they were admitted to the hospital. Sometimes the child was downgraded to accommodate a doctor's vacation and travel schedule. Sometimes the hospital just forgot to renew the child on the 1A list.
Reality is today, you're hard-pressed to find much in the way of heart transplants at the "heart transplant center" at University Children's Hospital, Fairview. Not lately.
In recent days to prepare their patients and staff for our reporting this week, the hospital sent out a letter, saying they've performed 22 pediatric heart transplants since 2000. That's true. What they don't say is that they haven't done any this year. They didn't do any last year. And they did just one - in 2006.
Nationally, medical ethicist Arthur Caplan told us that UNOS (the national organization managing the list) should be flagging cases where children move up and down the list for a heart, without being transplanted. "When you get variations, kids moving up and down the list, according to the hospitals needs of staffing or vacations or whatever's on their minds, the national system should be taking a look and saying 'what's going on?'"
Caplan says this is a national problem. "At any given time, a third of all adults on that list are inactive," Caplan told us. "Meaning they're not being considered on that day for a transplant even though they may absolutely be in need of a transplant." Caplan says sometimes, it means the transplant center is too busy on the day an organ becomes available. And sometimes the doctors are otherwise gone.
It's worse with kids he says, because organs for children are so much harder to find. The situation in Minnesota, he says, is particularly troubling. "There are a lot of factors going on when a transplant center as prestigious as the U of M has a track record of doing a number of transplants per year, heart transplants on kids, and then falls all of a sudden into a kind of dearth of transplants," Caplan said. "When that situation arises, first and foremost, parents need to know what the situation is, that's part of 'informed consent,'" he said.
When we asked Dr. Daniels with the University of Minnesota Physicians group whether they explain to families that the hospital hasn't done a transplant in the last two-and-a-half years, she said, "I would assume they have access to all that information. How much they've been told or remember I can't really comment on that."
Jack Corbo's family paid the ultimate price here. And Abby's St. Louis transplant team tells us it's amazing she survived. She waited for a new heart for 16 months in Minnesota and Missouri. The transplant team says they haven't known a child to last more than six months, on all the drugs she was taking, without being transplanted or dying.
When this reporter shared that information with Abby's parents, they were stunned. "We hadn't heard that," Abby's mother Heather, said. Abby's father, Mark, said, "It feels incredible that she's had to do so well. It feels pretty unfair. If it hadn't been for her strength, her resilience, all the prayers we've had for her. They make a difference too, right? How quickly this could have gone the other way?
(Copyright 2008 by KARE. All Rights Reserved.)