Surgical death rates for babies kept secret from parents

(CNN) — Take a look at a newborn’s tiny fist. Now imagine the fist is a heart — they’re about the same size — and a surgeon must operate on it. Patch up holes. Widen vessels the diameter of a cocktail straw. Sew in thin plastic tubing.

It’s incredibly risky business. For the most complex types of children’s heart surgeries, one out of five patients will die.

Now imagine you’re pregnant, or your partner is, and you go in for a regular ultrasound and receive the shocking news that your baby has a heart defect, and without surgery, she will die.

Wanting the best surgeon, you go online and look for success rates at hospitals near you and you find …

Nothing.

That’s the case at more than half the hospitals that perform children’s heart surgery — they provide no data on how many of their patients live and how many die. CNN’s review of hospitals is the first to assess transparency at programs that operate on children’s hearts.

Sixty out of the 109 hospitals fail to reveal such basic information. That’s a stunning lack of transparency considering some 22,000 babies and children have heart surgery every year.

Pediatric heart programs look impressive on their websites, with glowing claims and pictures of smiling children. But don’t be fooled. According to data obtained by CNN from the Society of Thoracic Surgeons, among these 109 hospitals, the death rates range from around 1.4% to 12.1%. That’s a huge difference in the number of children saved.

“I feel like patients don’t know what every physician knows: that there’s a tremendous variation in the quality of medical care out there,” says Dr. Martin Makary, a professor of surgery at Johns Hopkins University School of Medicine. “Some surgeons have impeccable records, and some have patterns of complications that are outrageous.”

The Society of Thoracic Surgeons, the largest professional organization for heart surgeons in the United States, said it “considers public reporting an ethical responsibility of the specialty.” But when the group asked pediatric heart hospitals to report outcomes on its website, fewer than one out of three agreed.

Dr. Jeffrey Jacobs, professor of cardiac surgery at Johns Hopkins, has led the charge to persuade children’s heart surgery programs to be open about their death rates.

“It’s disappointing, but it’s better than it was five years ago. It’s moving in the right direction,” says Jacobs, chair of the Society of Thoracic Surgeons National Database Work Force.

Jacobs points out that reporting isn’t just valuable because it helps parents make decisions — reporting is an actual measure of quality.

A study presented in April at the American Surgical Association found hospitals that publicly report their outcomes for adult heart surgery have lower death rates compared with those that don’t.

Hospitals that don’t release their mortality rates often argue that the number of patients in a certain category can be so small that one death will send the rate sky-high.

“These aren’t perfect measures,” says Dr. Charles Fraser, chief of congenital heart surgery at Texas Children’s Hospital in Houston, which publicly reports its outcomes. “But at some level you have to say this is the best we have at this point, and you can talk to families and explain what the measures do and don’t provide.”

If your child needs heart surgery, use CNN’s guide to find out what hospitals reveal about their death rates.

Sadly, most hospitals reveal nothing. That’s when you have to start asking questions, because these are tough operations and success is never certain.

Dr. David Shahian, a professor of surgery at Harvard Medical School, says that doctors aren’t afraid to ask direct questions when getting care for their own children and neither should you be.

“All patients and families have a right to ask very specific questions of their prospective heart surgeon, and they should never be embarrassed to do so,” says Shahian, vice president of the Massachusetts General Hospital Center for Quality and Safety.