The mortality rate for babies having open heart surgery at St. Mary's Medical Center was three times the national average from 2011-2013
At least eight babies have died after having heart surgery in the hospital's pediatric heart surgery program
"We're fortunate that our daughter is paralyzed and still with us," says one parent
Update: In the week since this story first published, St. Mary’s Medical Center and the State of Florida have responded to CNN’s reporting. You can read the responses and other information about children’s heart surgery mortality rates here.
She was only 7 weeks old, weighed a mere 10 pounds, and had just had delicate surgery to widen a narrowing in her aorta, the vessel that carries blood from the heart to the rest of the body. If that wasn’t enough, after the surgery, Layla McCarthy stopped moving her legs. The doctors couldn’t explain why.
Terrified she might never walk, Layla’s mother, Christine McCarthy, sought solace from family and friends. A stranger overhead them talking in an elevator at St. Mary’s Medical Center in West Palm Beach, Florida.
“Do you know a child with a heart problem here?” asked the stranger.
“Yes. My daughter,” McCarthy answered, and explained what had happened to Layla.
“You need to get her out of here,” the stranger warned.
The woman, who was visiting a family member in the hospital, told them staff had whispered to her about problems at the hospital’s pediatric heart surgery program, which at the time was not even a year old. There was talk that an unusually large number of babies were having complications and many weren’t surviving.
Shaken, McCarthy called her husband, Matt. Together they decided to call Layla’s cardiologist, Dr. Emmanouil Tsounias, and ask to have Layla transferred to another hospital.
“That’s a really good idea,” they remember the doctor saying. “I’ll be right over.”
He arrived in Layla’s room with the transfer papers and closed the door.
“Make sure you’re adamant about this,” McCarthy remembers him saying. “Don’t let anyone here talk you out of it.”
The McCarthys were shocked. Why hadn’t he said something earlier? Had he known all this time that St. Mary’s was not the best place for their baby?
Grateful for the stranger’s warning in the elevator, the McCarthys arranged to have Layla transferred out the next day to Miami Children’s Hospital, 80 miles away. Two and a half years later, she’s a paraplegic, but alive.
The McCarthys had no idea the hospital their baby was at was extremely inexperienced at doing such complicated heart surgeries on newborns. By the end of 2013, the mortality rate for babies having heart surgery there was three times the national average.
At least eight babies have died since the pediatric open heart surgery program at St. Mary’s Medical Center began in December 2011, including Keyari Sanders, Alexander Gutierrez-Mercado, Amelia Campbell, Pa’rish Wright, Landen Summerford, Weston Thermitus, Milagros Flores, and another baby whose family wishes to remain anonymous. Many of their parents want to know why no one warned them that St. Mary’s was relatively inexperienced at such tremendously difficult and risky operations.
’Babies as sacrificial lambs’
Nneka Campbell didn’t start out hurting and angry - in fact, quite the opposite.
In the beginning, Campbell thanked God that her baby’s surgery would be performed at St. Mary’s by Dr. Michael Black, the newly arrived “superstar” surgeon from Stanford University Medical Center.
Black impressed Campbell from their very first meeting. He’d been the chief of cardiac surgery at Stanford’s Lucile Packard Children’s Hospital. He said he had invented techniques for operating on tiny hearts. She says he told her he’d never lost a single patient during his time at St. Mary’s.
“I felt like, wow, we’ve got this superstar that’s come here,” Campbell remembers. “He gave you the impression that he was working smarter and better than other doctors in the area, almost like the others were doing something that was a little antiquated.”
So Campbell was shocked when her 8-month-old daughter, Amelia, came out of the operating room blue and needing to be intubated. Then she says Amelia’s head swelled, her kidneys stopped working properly, and an infection developed in her leg.
Her parents asked for her to be transferred to Miami Children’s Hospital. By then Amelia was so sick, her mother says, there was very little hope, and she died at Miami Children’s.
Death certificates and interviews with parents show Amelia was the fourth baby to die after having heart surgery at St. Mary’s with Black. She was not, as her mother says she was told, the first.
“There is no room for institutions that are lying to families to get them to offer up their babies as sacrificial lambs,” Campbell says.
The shocking numbers
The hospital keeps its death rate secret. Calculating that rate required CNN to file a Freedom of Information request with the state of Florida’s Agency for Health Care Administration.
According to the documents CNN obtained from the state, from 2011 to 2013, St. Mary’s Medical Center performed 48 open heart surgeries on children and babies. Independently, CNN determined that six infants died, and confirmed the deaths with parents of all six children. From those numbers, CNN was able to calculate the death rate for open heart surgeries as 12.5%, more than three times the national average of 3.3% cited by the Society for Thoracic Surgeons.
CNN reached Dr. Michael Black on his cell phone to ask about the babies who died after his surgeries.
“I hear you’ve been asking questions about me,” he said. “You should come down here and we can talk.”
He said a hospital spokeswoman, Shelly Weiss Friedberg, would be in touch to set a date for the meeting.
A few days later, Friedberg emailed to say Black wouldn’t be doing an interview, and neither would hospital executives.
After St. Mary’s repeatedly denied requests for interviews, CNN approached Davide Carbone, the CEO of St. Mary’s, at his home. He shut the garage door without commenting.
A very reassuring grin
Angie Loudon’s son, Landen Summerford, had open heart surgery at St. Mary’s less than a year after Amelia’s death.
When the procedure did not go well, Loudon says, Black recommended another operation.
“He had a very reassuring grin on his face. A comforting grin – like, ‘I got this,’ ” she says.
Landen died shortly after that second surgery. He was 2 months old.
She says Black told her he loved her and her baby and seemed shocked he wasn’t able to save Landen.
“Dr. Black told me he would write this up for a medical journal, because it was such an extraordinary situation,” she remembers.
Loudon asks CNN a question. “Dr. Black said he’d lost only one other patient before Landen. Is that true?”
When she hears that her baby was the sixth to die after surgery with Black at St. Mary’s, she breaks down, sobbing uncontrollably. She says she, too, was lied to.
“I put all my faith in him. How do you know not to put all your faith in someone?” she asks.
‘A total mess with newborn babies’
Some of the parents now torture themselves. They trusted the cardiologists who referred them to St. Mary’s for surgery. Should they have asked more questions, searched online for the hospital’s mortality rate?
They wouldn’t have found anything. St. Mary’s website heralded the arrival of “nationally renowned pediatric heart surgeon Dr. Michael Black” with glowing claims such as “smaller incisions – improved self-esteem.”
But there’s no actual data. Unlike most other pediatric heart programs in Florida, St. Mary’s does not publicly report its mortality rate.
That’s why CNN had to file a Freedom of Information inquiry to obtain the patient caseload data necessary to calculate the 12.5% death rate for open heart surgeries.
St. Mary’s, owned by Tenet Healthcare, says CNN is wrong about the program’s death rate, but refuses to say what it considers to be the right death rate.
In a statement to CNN, Carbone, the hospital CEO, wrote that providing raw mortality data “does not give proper context for the complexity and severity of each case, which could potentially lead to providing misleading information to consumers.”
“Our goal is to provide the best possible quality care to every patient we treat,” Carbone wrote.
But multiple studies show hospitals like St. Mary’s tend to give the worst-quality care to children with heart defects, because they get so little practice. The studies show hospitals with fewer surgeries tend to have higher death rates, especially when the surgeries are complex.
While the specific numbers vary slightly according to how they are reported, the numbers at St. Mary’s are very low.
According to an independent review of St. Mary’s program, the hospital did 23 heart operations in 2013.
To put that in perspective, consider that in the United States, 40% of pediatric heart surgery centers in the United States perform more than 250 cases a year, according to data from the Society of Thoracic Surgeons. Eighty percent of centers do more than 100 cases a year. Anything less than 100 cases a year is considered “low volume” by the society.
The volume of open heart surgery cases at St. Mary’s keeps getting lower: from 27 cases in 2012 to 18 in 2014, according to documents filed by the hospital with the Florida Agency for Health Care Administration.
“Like anything else, if you use a skill only occasionally, it’s hard to develop,” says Dr. Roger Mee, the former chief of pediatric heart surgery at the Cleveland Clinic. “With something as complex and dangerous as children’s heart surgery, you have to develop a whole team, and it’s hard to develop a team around 27 cases.”
“With 27 cases a year,” he adds, “it would be easy to make a total mess with newborn babies.”
A Christmas day effort too late
Two months after Amelia passed away, Pa’rish Wright was born at St. Mary’s Medical