When Mary Ellen Mannix was told that her newborn son would need heart surgery to repair a birth defect, she wanted to know two things right away: What were his chances for survival, and where was the best place to go for his operation.  

Those were difficult questions to answer. Some 40,000 babies are born with congenital heart disease each year, and at least a quarter of those tiny patients require multiple surgeries in their first months of life. But until recently, it’s been hard for families to identify high-quality pediatric heart centers or individual surgeons.

“I had to make do with word of mouth, and with what doctors and surgeons were willing to voluntarily tell me,” Mannix says.

Mannix has since become a leading advocate for greater transparency in medicine, especially in congenital heart disease and pediatric heart surgery. She has volunteered with several groups, including The Newborn Coalition and Mothers Against Medical Errors, co-authored an article in a medical journal, and was recently appointed to Pennsylvania’s Patient Safety Authority Governing Board.    

In 2015, the Society of Thoracic Surgeons—the professional group that represents surgeons who operate on the chest and heart—launched a voluntary public reporting program for congenital heart surgery, making it possible to find high-performing hospitals. 

Now, 117 hospitals across the U.S. that perform surgery to treat congenital heart surgery have submitted data to STS, and 50 have agreed to share that information with Consumer Reports, making them the first such ratings of hospitals that perform pediatric heart surgery.

“Families have been desperate for this information,” says Doris Peter, Ph.D., director of Consumer Reports’ Health Ratings Center. “We congratulate those surgery programs who have decided to share their data with the public. We know it will help parents make some critical decisions at a crucial moment in their lives.”

To rate a hospital, statisticians compare the percentage of its patients who die in the hospital or within 30 days of discharge, after adjusting for the difficulty of the patients' cases, as determined by the types of procedures that were performed and how sick patients were at the time of surgery.

Of the 50 pediatric hospitals that shared their data with Consumer Reports, eight received the highest possible rating, one the lowest score, and the rest fell in between, as shown in the charts below.

What to Look for in a Pediatric Heart Hospital

Though the new ratings provide a good starting point for parents whose babies have congenital heart disease and need heart surgery, they do have some limitations.

For example, they don’t include any information about individual surgeons, or about mortality rates for specific procedures or diagnoses. Instead, they’re all grouped together.

The ratings also can’t tell you how well patients tend to do years after their surgeries—how good their quality of life tends to be or how great their overall life expectancy.

Tara Karamlou, M.D., a pediatric heart surgeon at Phoenix Children’s Hospital, says STS and its member surgeons are hoping to provide that and other information in the future. “We don’t yet have a way to measure all aspects of care,” she says. “But we are working to get there.”

In the meantime, if you’re trying to figure out which hospital to take your baby to, start with the ratings, but take these additional steps as well.

Research your options. If the facility you’re considering isn’t in our ratings, check the STS website, because it includes some information about other hospitals. If the hospital has no publicly reported outcome data, and won’t share it with you, consider another facility. In general, even a low rating is better than no rating because public reporting at least shows the hospital believes in transparency and is committed to improvement.

Talk to the surgeon. You’ll especially want to know how often he or she performs the surgery in question and what the success rate is. In general, the more often a doctor or hospital performs a given operation, the better the outcome is likely to be.

Source: AFP