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Parents want answers in baby deaths
05:39 - Source: CNN

Story highlights

Kentucky Children's Hospital halted its heart surgeries in 2012

The hospital is resuming its pediatric heart surgery program

Parents of five babies who died still don't have answers

Kentucky Children's says it's doing things differently now

CNN  — 

Joequetta Lewis got to hold her newborn son for 53 days.

“And then the next day,” she said, “he was gone.”

Rayshawn Lewis-Smith was one of five babies known to have died within 11 months of undergoing heart surgery at Kentucky Children’s Hospital in Lexington – surgeries that, nationally, babies usually survive.

“He was born, and he looked as healthy as any of my other children,” said Sarah Moore, whose son Jaxon was the first to die. “I held him. And then three weeks later, I was burying him.”

Elizabeth Cohen

Shortly after the fifth death in 2012, Kentucky Children’s decided to stop its heart surgeries and placed its only pediatric heart surgeon on leave.

At the time, the babies’ parents said, they didn’t receive any explanation. And today, they’re still waiting for answers.

“Something happened,” Lewis said. “Can’t nobody give me no answers.”

But now, pediatric heart surgeries are resuming at Kentucky Children’s Hospital – without any reported investigation by the state health department and without oversight by anyone.

There seems to be no medical governing body that needs to sign off on the decision to reopen the heart surgery unit.

“The only person I need permission from is me,” said Dr. Michael Karpf, executive vice president for health affairs at the University of Kentucky’s health care system, which includes Kentucky Children’s Hospital.

10 ways to get your child the best heart surgeon

Last year, Karpf said, he put the pediatric heart surgery program on hold because the mortality rates weren’t what he wanted them to be.

“They were OK, and OK isn’t good enough for me,” he said at the time. “It’s got to be better. It’s got to be good.”

Karpf commissioned an internal report (PDF) on the heart surgery program. Parents of the dead babies hoped that might provide them with some information.

But the 102-page report doesn’t explain why the babies died. In fact, it doesn’t acknowledge any deaths at all.

“How do you know when the problems have been fixed when they’re not identified?” asked Kevin Allen, whose daughter Kalyn died in January 2012. “I mean, they could say they fixed them. But is an internal review really objective?”

Asked in May whether parents should trust that Kentucky Children’s would fix any issues before reopening the program, Karpf threw his hands in the air.

“This is America,” he said. “You know, they have a choice. They can trust us or not trust us. All I can tell them is, I’m not going to reopen until I feel good about it. It’s as simple as that.”

A hospital spokesman declined a request for another interview with Karpf, referring questions to a news release about the internal report.

CNN reached Karpf this month as he arrived to speak at a community center and asked whether he could give parents some answers about why their children died.

“Unfortunately, babies die at children’s hospitals after having heart surgery at other places also,” he said. “We explained to you that our mortality (rate) fit the national standards.”

Kentucky Children’s, however, has been reticent to release statistics on the program, unlike other hospitals that are more transparent.

After a legal battle – which saw the Kentucky attorney general requesting data and the university appealing to a state circuit court – the hospital released the following number: Patients at Kentucky Children’s Hospital were dying after all heart surgeries at the alarming rate of 7.1%.

That’s more than double the national average of 3.2%.

Karpf won’t say how well it performed specific heart surgeries on children, information that some hospitals put on their websites.

“We as parents deserve this information,” said Jennifer Allen, Kalyn’s mother.

“I expect nothing more from a health care facility than honest answers. And whether it’s good or bad, we should know. I mean, that’s not too much to ask.”

Parents react to story on Kentucky heart surgeries

Shannon Hall, whose son Mason died, says it’s “scary” that the hospital is going to be taking pediatric heart patients again.

“It really hurts that they’re going to open this program back up,” Lewis said. “I’m very scared for the kids. I don’t want nobody else to go through this again.”

Moore said she’s worried about “the same thing that happened to my baby. … I never brought my child home. He never left the hospital.”

However, Kentucky Children’s says it’s doing things differently. The surgeon placed on leave has since left, so a new heart surgeon will be hired. The hospital also will dedicate an intensive care unit specifically for heart surgery patients and is considering forming a partnership with another hospital for pediatric heart surgeries.

In addition, the hospital says, it will no longer perform the most difficult types of heart surgeries.

But that doesn’t satisfy the parents still mourning their children.

“Sometimes, you feel like you’re alone through it,” Hall said.

“I don’t think that it gets any easier, ever,” Moore said. “I’ve been told my entire life that time heals everything. I don’t believe that. I still miss my baby. Every day.”

CNN’s John Bonifield, William Hudson and Ashley Hayes contributed to this report.