Amelia Campbell was born with a heart valve that was too tight.
Her mother, Nneka, took her to St. Mary’s Medical Center in West Palm Beach, hoping the surgeons could make her well.
On Oct. 12, 2012, when Amelia was just 10 months old, she died from complications that arose during open-heart surgery.
“I trusted that St. Mary’s Medical Center was one of the facilities that I could choose from for the care of my Amelia because it had met the standards of care for the procedure to be performed,” Nneka Campbell said last week in a tearful plea to state health officials. “I no longer trust that to be the case.”
Sign Up and Save
Get six months of free digital access to the Miami Herald
In recent months, the deaths of children undergoing heart surgery in Florida hospitals have been under scrutiny, particularly at St. Mary’s, where a high death rate became the subject of a CNN investigation and led to the hospital’s pediatric cardiology department closing.
Yet state health officials are moving forward with a plan that would get rid of standards for the hospitals that perform most heart surgeries on children.
It puts Republican legislators in an odd position entering a legislative session where they intend to open up healthcare to the free market: potentially reviving an old law to keep regulations in place.
“I see this whole fight as really a defense of standards in general,” said Dr. William Blanchard, a pediatric cardiologist with more than 35 years of experience.
Since the 1970s, a group of cardiologists has set basic requirements for the hospitals that receive state money to perform heart surgeries as part of the Children’s Medical Services plan. Right now, that covers eight hospitals, which together perform most of the surgeries in the state. They include Nicklaus Children’s Hospital and University of Miami Holtz Children’s Hospital in Miami and Joe DiMaggio Children’s Hospital in Hollywood.
They’re going to create standards which all other programs can aspire to, say this is a gold seal standard about how everybody should do heart surgery when they’re operating on little baby hearts that are less than the size of a walnut. That’s crazy itself.
State Sen. Aaron Bean
The standards require staff with certain levels of training, a minimum number of procedures per year and that the right equipment be on site. Each facility is inspected by doctors once every three years.
But in 2001, the Legislature voted to abolish the panel of doctors that writes those standards, the Cardiac Technical Advisory Panel. Since then, the doctors have continued to meet, set quality standards and inspect hospitals, despite being disbanded by lawmakers.
“We all agreed that these standards were good for kids, and they had proven guidelines that we know resulted in good surgical outcomes for children with heart diseases. So we operated as if we still had the legislative authority,” said Blanchard, who helped write the standards.
Now, the Department of Health wants to dismantle the panel, citing the Legislature’s decision 14 years ago.
The rules didn’t apply at St. Mary’s, where Campbell took her baby, because the pediatric cardiology program was new and not part of the Children’s Medical Services plan. Still, Blanchard said, the rules raise the bar for safety and quality as newer programs strive to meet them.
“Florida has really been a leader in this for a number of years,” he said. “We believe standards of performance and quality are the way to go. It’s a way to ensure that brand new parent that’s just found out their baby has a heart defect that they’re going to go to a hospital that meets basic standards for quality.”
Sen. Aaron Bean, R-Fernandina Beach, is working to keep the heart surgery standards intact. Legislation he sponsored would create the Pediatric Cardiac Advisory Council, allowing doctors and the state to set minimum requirements.
“They’re going to create standards which all other programs can aspire to, say this is a gold seal standard about how everybody should do heart surgery when they’re operating on little baby hearts that are less than the size of a walnut,” Bean said. “That’s crazy itself.”
However, the core of Republican healthcare proposals for the 2016 session are policies that would open up the market and relax regulations. House Speaker-designate Richard Corcoran, R-Land O’Lakes, said as much when he outlined his agenda last month.
“It’s time people realized that conservatives aren’t against healthcare for poor people, we’re against giving them poorly run government healthcare,” he said. “Our one and only priority will be this: a real free-market, patient-driven system that is affordable, accessible and accountable.”
To that end, lawmakers have proposed allowing nurse practitioners to prescribe drugs, creating facilities for hospital recovery and abolishing certificate of need, a state licensing program that limits hospital construction to areas where there is enough demand from patients to sustain them.
I see this whole fight as really a defense of standards in general.
Dr. William Blanchard, pediatric cardiologist
Bean, chairman of the Senate Health Policy Committee, says it’s important that the Legislature strikes a balance: protect children’s safety while pushing for free-market reforms that lawmakers hope will stem the rapidly rising cost of healthcare.
“It’s not just like gasoline where you can shop solely on price,” Bean said. “I buy the cheapest gas possible. . . . Healthcare is different. It’s not just the price, it’s about who knows what they’re doing and what kind of system of care is surrounding them.”
That reality is particularly true when dealing with delicate procedures like heart surgery on young children. That, says Blanchard, is where the state has a part to play.
Parents “go from this eagerness and impatience of having a baby,” he said, “to the chaos of hearing their child is going to have open-heart surgery,” and they assume hospitals and doctors meet minimum standards.
Even if Bean’s legislation passes and the heart surgery standards for Children’s Medical Services stay in place, the rules still won’t apply in every hospital — but they will set a bar for every facility in the state to meet, said Blanchard.
“I have to believe that the Legislature wants to ultimately do what’s right,” he said, “particularly for kids.”
Contact Michael Auslen at firstname.lastname@example.org. Follow @MichaelAuslen.