Babies die; hospital halts heart surgeries

Babies die; hospital halts heart surgeries
By Elizabeth Cohen, Senior Medical Correspondent
(CNN)
August 3, 2013

Connor Wilson was born February 13, 2012. He had his first surgery at Kentucky Children's Hospital a week later and a second surgery on May 11. On August 3, 2012, his heart stopped, but doctors got it beating again. "He never got better," says his mother, Nikki Crew. Connor Wilson was born February 13, 2012. He had his first surgery at Kentucky Children's Hospital a week later and a second surgery on May 11. On August 3, 2012, his heart stopped, but doctors got it beating again. "He never got better," says his mother, Nikki Crew.>
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Tabitha and Lucas Rainey were beginning to get suspicious.

The staff at Kentucky Children's Hospital kept telling them their infant son, Waylon, was recovering well from surgery. There had been a few bumps in the road, to be sure, but they said that was normal for a baby born with a severe heart defect.

Months passed. Waylon remained in the intensive care unit. More complications arose.

"Is everything OK?" the Raineys would ask.

Yes, the doctors and nurses assured them. Everything was fine.

Baby heart surgery concern

Then one day, Tabitha Rainey says a cardiologist took her aside.

"She said, 'If I were you, I would move him,' " Rainey remembers. "She told me we should take him somewhere else.'"

A few days later, the Raineys arranged to have Waylon sent by helicopter to the University of Michigan. By then their son, not quite 3 months old, was in heart failure.

Secret data

If Waylon Rainey had been born 30 years ago, he almost surely would have died a few days or weeks after birth. He has a condition called hypoplastic left heart syndrome, which means the left side of his heart is so malformed it can't pump blood.

Today, surgeons perform a series of three operations on babies like Waylon. They're high-stakes surgeries -- cutting into an organ the size of a newborn baby's fist is tricky, to say the least. The blood vessels can be thinner than a piece of angel hair pasta, and one wrong move, one nick, one collapsed artery or vein can be deadly.

These children are medically very fragile, and even the best surgeons lose patients. Surgeons track their deaths and complications and take great pride in the number of babies they save. Some are so proud they publish their success rates right on their hospital websites.

Kentucky Children's Hospital is not one of these hospitals.

Instead, Kentucky Children's Hospital has gone to great lengths to keep their pediatric heart surgery mortality rates a secret, citing patient privacy. Reporters and the Kentucky attorney general have asked for the mortality data, and the hospital has declined to give it to them. In April, the hospital went to court to keep the mortality rate private.

Parents of babies treated at Kentucky Children's say the hospital's effort to keep the data a secret, coupled with troubling events over an eight-week period last year, makes them suspicious something at the hospital has gone terribly wrong...

10 ways to get your child the best heart surgeon COMMENT

Jason Simpson • 12 hours ago

− I am a pediatric cardiologist.

Pediatric heart surgery is the most delicate/complex of any surgical procedure known to man. It is a hundred times more difficult to reconstruct a baby's heart than it is to do brain surgery or colon surgery.

This is why there is such widely divergent rates of mortality and complications between hospitals and between surgeons. There are only a handful of people in the world who have the technical expertise and judgment to do these surgeries well.

There are lots of other hospitals who advertise for pediatric heart surgery programs, but they use surgeons who haven't perfected their craft yet and are still basically in training. You want one of the top flight fully trained surgeons listed at the hospitals below.

The training of a pediatric heart surgeon is the longest training pathway of any doctor. 4 years med school, 5 years general surgery, 3 years adult cardiothoracic surgery, 2-3 years pediatric cardiothoracic surgery = 14-16 years AFTER you finish undergrad. Even surgeons who have completed that pathway still have a LONG way to go in order to be fully competent surgeons and practice at the top of their craft. Many pediatric cardiothoracic surgery fellows simply arent cut out for the job and they wash out and have to pick a different medical specialty. Most of them switch from pediatric to adult heart surgery, which is much less technically complex and far easier to do.

I've worked with dozens of pediatric heart surgeons at every level of their training, and from what I've seen it is impossible to tell for sure if they are going to be good surgeons until at least 3-4 years AFTER their fellowship is completed. So never pick a surgeon who is less than 4 years out from the completion of their fellowship.

IMHO, there are only a few places in the United States who are technically capable of pulling off these highly complex surgeries:

1. Boston Childrens

2. Texas Childrens Hospital (Houston)

3. UCLA

4. CHOP (Philadelphia)

5. Univ Michigan

6. Cincinnati Childrens

There are lots of other hospitals who advertise for pediatric heart surgery programs, but they use surgeons who havent perfected their craft yet and are still basically in training. You want one of the top flight fully trained surgeons listed at the hospitals above.

Places in Kentucky and other small volume centers have NO BUSINESS opening up a pediatric heart surgery program. If you live in the middle of the country, you need to take your child to one of these elite academic medical centers in order to get good care.