U of M Children's Hospital Investigation

3:39 PM, Nov 16, 2008   |    comments
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PART I The University of Minnesota is world-renowned for medical care, particularly as it relates to advances in cardiac care. And it is the only place in the Twin Cities where children can receive life-saving heart transplants.

 But over the course of the last several months, a KARE 11 investigation has found that - only one child has been transplanted there - since 2005. There have been no transplants in 2007 - or so far this year.

In fact, the only children to come off the list for a heart transplant this year - either died - or were transferred to an out-of-state hospital for their transplant.

Generally, we've found University Children's Hospital has taken children that could qualify for the highest-ranking available (1A), and ranked them lower(1B). The difference is substantial.

 In the period running from the spring of '07 to the spring of '08 - not a single child (ages 1-5) in the upper Midwest (Illinois, Wisconsin, Minnesota & the Dakotas) was transplanted as a 1B.

In that same time, 4 children were transplanted while ranked 1A.

Nationally, again, for children between the ages of 1 and 5, there were 70 transplants among those with a 1A ranking compared to 17 transplants among non 1As.

We also found instances where, even when a child was admitted to the hospital for the specific purpose of upgrading their ranking, the hospital would downgrade them again due to the doctor's vacation schedule.

 In some cases the hospital simply didn't take the steps necessary to keep the child 'current' with the 1A ranking, which requires re-certification every 14 days.

Nationally, the United Network for Organ Sharing (UNOS) manages the wait-list for organ donation -including hearts. It's UNOS that sets the guidelines regarding who can be ranked where. UNOS also determines which child is offered an organ - when one becomes available.

But hospitals and transplant centers are the ones that place the child on the list and assigns a ranking - based on UNOS criteria.

 The sickest are generally ranked 1A - making them most-likely to receive a new heart.

 Abby Ostlie was 3 years old when she was first ranked by the U of M Hospital for a transplant. Abby was born with a heart defect.

She had a two-chambered heart. A normal, healthy heart has four chambers. Early attempts to correct the problem by surgery did not hold.

She was on high-dose drug therapy, designed to keep her weak heart beating. She got on the list and she waited.

Abby qualified for a 1A ranking, according to UNOS guidelines, based on her drug therapy alone. Because those drugs seriously compromise a child's immune system, it's not uncommon for families to seek to treat a child like Abby, at home.

"We wanted her to be home," Heather Ostlie, Abby's mother told us, "Because we know that's the best place for her spiritually, physically. And it's better to be home with your family."

Some doctors we've talked to tell us that's even a good idea. Kids like Abby can be killed by the common cold and in a hospital they can be exposed to much worse than that. But, according to the family, and their referring physician, the U of M Children's Hospital told Abby's family if she were treated at home she could not stay on the 1A list.

 Abby did stay at home and they downgraded her to 1B. She waited more than 14 months, mostly at home, and mostly on that 1B list.

Dr. Amarjit Singh, the doctor who referred her to the University of Minnesota Children's hospital, says she kept getting weaker. Ultimately, he recommended the family relocate her to St. Louis, which performed more child heart transplants than any other transplant center in the nation last year.

While it was the number of transplants that lured the Ostlies to St. Louis, it was the way they did business that would prove most profound.

 The first thing St Louis did was upgrade Abby's ranking to 1A. Unlike the U of M Children's Hospital in Minnesota, they did not require that she be hospitalized for that ranking.

The family was truly shocked that their daughter could be upgraded so easily. Abby's father, Mark Ostlie told us, "We thought we were already doing the best thing we could be doing."

In the years Abby waited for a heart here in Minnesota (2007 & 2008) without a single heart transplant being performed, St. Louis performed heart transplants on 36 children.

The University of Minnesota Children's Hospital, Fairview will tell you, Minnesota doesn't fare very well in the national transplant system, because we're so geographically isolated.

 They say there are more potential donors within 500 miles of St. Louis than there are here. And that's true.

But it's also true, as recently as 2005, our University Hospital was doing more child heart transplants than they do today.

The hospital has not done a pediatric heart transplant in more than two years. For its part, the U of M Children's Hospital has refused to acknowledge they even have this practice of requiring hospitalization.

Dr. Bobbi Daniels, chief medical officer of the University of Minnesota Physicians told us she had a different understanding of the policy. She told us, "There's a certain element of judgment that the surgeons involve in the care of the child may apply."

While she described a practice of case-by-case medical judgment, our investigation found the practice of requiring hospitalization in order to achieve the top ranking very real.

We've confirmed it through several families with kids treated at the U Children's hospital. We've confirmed it with several medical staffers inside the hospital. And we've confirmed it with Dr. Amarjit Singh, Abby's referring physician, who says the U of M Children's Hospital has been doing business this way for years.

 Singh told us he thought the U-Children's Hospital was just following national guidelines when they required in-hospital care for a 1A ranking. Now, he says he knows that's not true.

 We asked Dr. Singh if he believes the additional practice of requiring hospitalization for a child to have a 1A ranking, essentially takes the children UNOS believes to be among the sickest children, and ranks them lower on the list for a heart? He called that added qualification, "very significant."

It's worth noting, UNOS, which manages transplants nationally does not require hospitalization for kids like Abby. But the Ostlies and their doctor say that is certainly what they were led to believe.

Medical ethicist Art Caplan said to the degree the U Children's Hospital is presenting something as "the way the system works," when it's not, they're "really doing something unethical in getting informed consent from the parents."

Dr. Singh, Abby's referring physician, says he considers his effort, transferring Abby to St. Louis, as an effort to "save her life." He is the doctor who diagnosed her condition - before she was born.

He said there's a lot of "emotional investment" with the child and the family. "You want her to get the best care possible," he said. "You feel like you've been misled."

Dr. Daniels, with the U Children's Hospital and the University of Minnesota Physicians insists, "The major issue here is that there aren't enough organs."

When asked which is more important, the lack of organs, or being on the wrong list She replied, "Well, there aren't enough organs no matter what list you're on."

 Caplan, the ethicist, says it's true donor hearts are very hard to come by, particularly for children, but "all that said, at the end of the day you have to be a good advocate for the kids."

The Ostlies say they were lucky to get a second chance. A second chance to advocate for their daughter, to have an outside physician intervene, and to find another transplant center willing to turn things around for their little girl. But how many other children are denied a second chance?

(Copyright 2008 by KARE. All Rights Reserved)

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