- Researchers writing in JAMA ask whether its time to consider shutting down poor-performing children's heart surgery hospitals
- For one type of pediatric heart surgery, the death rate was 16.9% at an experienced center and 36.5% at a less experienced center
(CNN)The surgeon starts to tear up as he describes taking the baby off life support.
He'd lost patients before; that's the reality when you operate on tiny, malfunctioning hearts.
But this death was different, the surgeon says.
This baby didn't have to die.
The surgeon spoke on the condition of anonymity because he doesn't have permission from his employer to speak about the baby's case.
The infant had been transferred to his hospital after having surgery at St. Mary's Medical Center in West Palm Beach, Florida. He and his team tried to save her.
"We were called in late to fix a problem caused by someone else," the surgeon says.
"It makes you angry when you have to fix someone else's lethal mistakes."
After a CNN investigation into the deaths of babies after heart surgery at St. Mary's, the hospital shut down its program in August.
At least nine babies died after heart surgeries there over the course of 3½ years, from the end of 2011, when the program started, and June 2015. Another infant, Layla McCarthy, was paralyzed after heart surgery at St. Mary's and was transferred to a different hospital for treatment, and survived. Jashnide Desamours, a newborn, went into cardiac arrest and was put on life support after heart surgeries at St. Mary's. Her mother asked for her to be transferred to a different hospital, where she had surgery and survived.
The program at St. Mary's is closed, but surgeons who study the issue say there are other programs still operating on children's hearts that aren't very good at it.
The surgeons say those children are sent to them in dire condition.
"I've seen botched surgeries. I've seen cases where they did the wrong surgery," says Dr. Edward Bove, chief of the department of cardiac surgery at the University of Michigan Health System.
Dr. Joseph Forbess, director of cardiac surgery at Children's Medical Center Dallas, says he's seen the same.
"By the time they send them to us, the child is dying," he says. "It's very difficult for us because you know you could probably have done it better. You keep your emotions in check, but in some ways you're ticked off and sad at the same time."
Now some doctors are saying enough is enough.
'Quality of care is not the same at all hospitals'
On the heels of CNN's report about babies' deaths at St. Mary's, a team of researchers has proposed that policy makers consider telling some hospitals to stop doing complex heart surgeries on children.
"[CNN's] investigation has stimulated a long overdue discussion," Dr. Sara Pasquali, associate professor of pediatric cardiology at the University of Michigan wrote recently in the Journal of the American Medical Association.
Consider a surgery called the Norwood. Surgeons essentially have to replumb a newborn's heart, which is about the size of a strawberry. The risks are high: Out of more than 100 operations that surgeons do on children's hearts, the Norwood has the third-highest death rate, according to a ranking by the Society of Thoracic Surgeons.
Some hospitals are better at performing Norwoods than others. At the most successful programs, one out of 10 babies dies after getting a Norwood. At the least successful, four out of 10 will die, according to Pasquali's article.
And it's not just the Norwood. A study of 73 hospitals that looked at more than 58,000 congenital heart operations found that for the most complicated type of pediatric heart surgeries, hospitals' performance varied wildly. Some hospitals had mortality rates as low as 6.5%, but others were as high as 38.4% -- that's more than a six-fold difference.
"The quality of care is not the same at all hospitals that provide pediatric cardiac surgery," says Dr. Jeffrey Jacobs, chairman of the Society of Thoracic Surgeon's National Database Workforce.
'They don't know what they're paying for'
But as CNN has reported, parents usually have no way of knowing whether their child is at one of the successful hospitals, or one of the unsuccessful hospitals.
"It makes me sad and frustrated and at some levels incensed," says Dr. Charles Fraser, the head of the pediatric heart surgery program at Texas Children's Hospital in Houston.
A few private insurance companies have started to actively encourage parents to send their children to hospitals with low death rates.
But not Medicaid. The government program has mortality rate data -- it insures 40% of all children with congenital heart defects -- but it won't tell parents which hospitals are the best, or the deadliest.
Doctors who care for children note that the federal Center for Medicare and Medicaid Services reveals death rates for many adult surgeries, yet it remains silent about heart surgeries on vulnerable babies.
"It's puzzling that they don't ask some basic questions about quality," says Fraser. "They pay, but they don't know what they're paying for."
When CNN asked Aaron Albright, a spokesman for the Centers for Medicare and Medicaid Services, about this issue, he wrote in an email, "let me see if CMS has a roll [sic] in this," and didn't send any further response.
'Easy to make a total mess with newborns'
There are many reasons why one hospital might be better than another at operating on tiny hearts, but this is a major one: practice.
Simply put, when a surgical team gets more practice fixing complicated heart defects, the team gets better at it.
And it's not just practice in the operating room. Bove, the University of Michigan surgeon, says many times he's seen experienced nurses save children's lives by picking up on subtle changes after the surgery, changes they've learned to notice through years of experience.
Statistics bear this out.
According to a study cited in Pasquali's report, when babies had the Norwood at an experienced center, the death rate was 16.9%, but when babies had the operation at a less experienced center, the death rate was 36.5%.
Pediatric cardiac surgery and pediatric cardiac care require mastery of multiple critical, volume-related skills," notes Jacobs, a professor of surgery at Johns Hopkins who has extensively studied death rates at pediatric heart surgery programs.
"The more operations you do, the better you perform."
Many hospitals don't get much practice. According to Society of Thoracic Surgeons data obtained by CNN, 32 out of 113 hospitals are considered low volume, meaning on average they perform fewer than 100 congenital heart procedures a year.