More than 250 people have signed an online petition urging University of Kentucky Healthcare to release information about how many children died after undergoing heart surgery at Kentucky Children's Hospital.
Tabitha Rainey said she started the petition on Change.org after she was interviewed by CNN about the experience that her son, Waylon Rainey, had at UK after cardiothoracic surgery. Waylon was moved to another hospital and survived, but CNN identified two other babies who died.
"They won't give us any answers, and there are so many outraged parents saying, 'Is there anything else we can do?'" Rainey said Monday. "I figured it would be a good time to get it out there."
The petition asks for UK to make public the mortality rates for pediatric cardiothoracic surgery patients from 2010, 2011 and 2012. That three-year span includes the tenure of Dr. Mark Plunkett, a cardiothoracic surgeon who came to UK from the UCLA medical center in 2007.
All pediatric cardiothoracic surgeries were suspended at UK last fall amid an internal review. Plunkett remained on staff, and UK announced last month that he had taken another job at the University of Florida.
In May, the state attorney general's office issued an opinion stating that UK must release mortality rates and other data about the cardiothoracic surgery program to WUKY, the university-owned radio station. UK has acknowledged that it calculated mortality rates for the program as part of its investigation, but it has refused to release them, citing patient confidentiality laws.
WUKY and the Lexington Herald-Leader requested the data under the Kentucky Open Records Act, but UK has appealed the attorney general's ruling in Fayette Circuit Court.
Some of the people who signed the petition have talked about the deaths of other heart surgery patients at UK, including that of Kalyn Faith Allen, who died in January 2012. Her parents, Jennifer and Kevin Allen of Martin, both signed the petition.
"I am the mother of Kalyn Faith Allen born 9/14/2010 at UK who passed away 1/3/2012 at UK after having several surgeries performed by Dr. Plunkett," Jennifer Allen wrote on the petition. "We deserve to know this information, we CAN understand and comprehend this information. It is our right to know and the right of the public!"
In a phone interview Monday, Jennifer Allen said Kalyn suffered from hypoplastic left heart syndrome, the same condition that affected several of Plunkett's patients. It means the left side of the heart is underdeveloped and can't pump blood properly.
Kalyn underwent three highly complicated surgeries at UK before doctors told the Allens to take their daughter to the C.S. Mott Children's Hospital at the University of Michigan, the same hospital where Waylon Rainey was successfully treated.
Kalyn had one surgery at Mott but died in Kentucky on Jan. 3, 2012.
Allen said she finds it "very suspicious" that UK won't release the information that the public is requesting.
"There were a lot of times (at UK) when a lot of questions were asked and we weren't given the answers we were looking for," Allen said. "This is a concern for us as the parents of a child lost during the time frame when all this activity was going on."
CNN identified two other children who died: Connor Wilson, who died Aug. 30, 2012, and Rayshawn Lewis Smith, who died Oct. 16, 2012.
Shannon and Miranda Russell's son, Jaxon, survived after what they describe as a "botched" heart surgery at UK, according to their nonprofit, Lil' Heart Sluggers. He later was operated on successfully at Nationwide Children's Hospital in Columbus, Ohio.
An investigative report on the pediatric cardiothoracic program has been underway since 2012, but UK spokesman Jay Blanton said Monday it was not yet completed.
UK Healthcare CEO Michael Karpf said in a statement Monday that the review process also required confidentiality.
"At the initiation of this peer review and before there were ever any questions from the media, we voluntarily and immediately put on hold pediatric cardiothoracic surgeries until the review process is complete," the statement said. "That was — and still is — the right thing to do."
Officials at C.S. Mott Children's Hospital said their data on pediatric heart surgery outcomes was currently being collected so that it could be put online. UK also lists some patient mortality data on its website.
Rainey said she doesn't accept UK's response that publicly releasing mortality rates would somehow harm patient confidentiality.
"There are no names and no dates, just the data on how many have passed on," she said.
Jennifer Allen said she was particularly offended by Karpf's assertion to CNN that raw data is complicated, and the public might not fully understand it. She said pediatric heart surgeries are incredibly complicated, but parents manage to educate themselves about it every day.
"Even though we can't benefit from it any longer, I want to help others get this information," Allen said. "Whether he feels we can understand this information is irrelevant."