Advocates for health care safety will tell you that hospitals that operate on babies' hearts should keep no secrets about the success of their operations. A CNN investigation reveals, however, that more than half these programs do keep their data secret. Here's a list of the programs and which are transparent and which are not. The more check marks you see next to a hospital’s name, the better. We hope that by shedding light in these dark places we'll help save babies' lives. For a guide on how to read this chart, click here.
|Hospital||Location||STS public reporting||Overall volume||Volume by procedure||Mortality by procedure||Mortality by complexity||More than one surgeon|
|Advocate Children's Hospital||Oak Lawn, IL||Y||Y||Y||Y||Y||Y|
|Akron Children's Hospital||Akron, Ohio||Y|
|Albany Medical Center||Albany, NY|
|All Children's Hospital||St Petersburg, FL||Y||Y||Y||Y||Y||Y|
|Ann & Robert H. Lurie Children’s Hospital of Chicago||Chicago, IL||Y||Y||Y||Y||Y||Y|
|Arkansas Children's Hospital||Little Rock, AR|
|Arnold Palmer Hospital for Children||Orlando, FL||Y|
|Banner Children's (Cardon)||Mesa, AZ|
|Batson Children's Hospital (Univ. of Mississippi)||Jackson, MS||Y||Y||Y|
|Carolinas Medical Center (Levine)||Charlotte, NC||Y||Y||Y||Y||Y|
|Cedars-Sinai Medical Center||West Hollywood, CA|
|Children's Healthcare of Atlanta (Emory)||Atlanta, GA||Y||Y||Y||Y|
|Children's Hospital of Alabama||Birmingham, AL||Y||Y||Y||Y|
|Children's Hospital Boston||Boston, MA||Y||Y||Y||Y|
|Children's Hospital Colorado||Aurora, CO||Y||Y||Y||Y||Y||Y|
|Children’s Hospital of Illinois||Peoria, IL||Y||Y||Y|
|Children's Hospital Los Angeles||Los Angeles, CA||Y|
|Children’s Hospital of Michigan (Detroit Med Ctr)||Detroit, MI||Y||Y|
|Children's Hospital Omaha||Omaha, Nebraska||Y||Y|
|Children's Hospital of Orange County||Orange, CA||Y|
|Children's Hospital of Philadelphia||Philadelphia, PA||Y||Y||Y||Y|
|Children's Hospital of Pittsburgh||Pittsburgh, PA||Y||Y|
|Children's Hospital of San Antonio (Christus)||San Antonio, TX|
|Children's Hospital of the King's Daughter||Norfolk, VA|
|Children's Hospital of Wisconsin||Milwaukee, WI||Y||Y||Y||Y||Y|
|Children's Hospitals & Clinics of Minnesota||St. Paul, MN & Minneapolis, MN||Y||Y||Y||Y|
|Children's Medical Center of Dallas||Dallas, TX||Y||Y||Y||Y||Y||Y|
|Children's Memorial Hermann Hospital||Houston, TX||Y|
|Children's National Medical Center||Washington, DC||Y||Y||Y||Y||Y|
|Cincinnati Children's||Cincinnati, OH||Y|
|Cleveland Clinic||Cleveland, Ohio||Y||Y|
|Cohen Children's Medical Center||New Hyde Park, NY||Y|
|Connecticut Children's Medical Center||Hartford, CT||Y||Y|
|Cook Children's||Fort Worth, TX||Y||Y|
|Covenant Children's||Lubbock, TX|
|Dell Children’s Medical Center of Central Texas||Austin, TX|
|DeVos Children's Hospital||Grand Rapids, MI|
|Driscoll Children's Hospital||Corpus Christi, TX|
|Duke Children’s Hospital & Health Center||Durham, NC||Y||Y|
|Florida Hospital for Children||Orlando, FL||Y||Y||Y||Y|
|Geisinger Medical Center||Danville, PA|
|Georgia Regents University||Augusta, GA|
|Inova Fairfax Hospital||Falls Church, VA||Y||Y||Y|
|Jackson Memorial Hospital||Miami, FL|
|Joe DiMaggio Children's Hospital||Hollywood, FL||Y||Y|
|Kapi'olani Medical Center for Women & Children||Honolulu, HI||Y|
|Kosair Children's Hospital||Louisville, KY||Y|
|Le Bonheur Children's Hospital||Memphis, TN||Y||Y||Y|
|Loma Linda University Health||Loma Linda, CA|
|Lucile Packard Children's Hospital (Stanford)||Palo Alto, CA|
|Maine Medical Center (Barbara Bush)||Portland, ME||Y||Y|
|Mary Bridge Children's Hospital||Tacoma, WA||Y|
|Mattel Children's Hospital (UCLA)||Los Angeles, CA||Y|
|Mayo Clinic (Rochester)||Rochester, MN|
|Medical City Children's Hospital||Dallas, TX|
|Methodist Children's Hospital||San Antonio, TX|
|Miami Children's Hospital||Miami, FL||Y||Y||Y||Y|
|Monroe Carell, Jr. Children's Hospital at Vanderbilt||Nashville, TN||Y|
|Montefiore Medical Center||New York, NY|
|MUSC Children's Hospital||Charleston, SC||Y||Y||Y||Y||Y|
|Nationwide Children's Hospital||Columbus, OH||Y||Y||Y||Y|
|New York Presbyterian Hospital||New York, NY||Y||Y||Y||Y|
|NYU Langone Medical Center||New York, NY||Y|
|Ochsner||New Orleans, LA|
|Oregon Health Sciences Univ (Doernbecher)||Portland, OR||Y||Y|
|OU Medical Center||Edmond, OK|
|Penn State Hershey Children's Hospital||Hershey, PA||Y||Y||Y|
|Phoenix Children's Hospital||Phoenix, AZ||Y||Y||Y||Y||Y|
|Presbyterian Hospital (New Mexico)||Albuquerque, NM|
|Primary Children's Hospital (Intermountain)||Salt Lake City, UT||Y||Y||Y||Y|
|Rady Children's Hospital San Diego||San Diego, CA||Y||Y||Y||Y|
|Rainbow Babies & Children's Hospital||Cleveland, OH|
|Randall Children’s Hospital at Legacy Emanuel||Portland, OR||Y||Y||Y||Y|
|Riley Hospital for Children (Indiana University)||Carmel, IN||Y|
|Rocky Mountain Hospital for Children||Denver, CO|
|Rush University Medical Center||Chicago, IL|
|Sacred Heart Children's Hospital||Spokane, WA||Y||Y|
|Seattle Children's Hospital||Y||Y||Y||Y|
|SSM Cardinal Glennon Children's Medical Center||St Louis, MO||Y|
|St. Christopher's Hospital for Children||Philadelphia, PA|
|St. Joseph's Children's Hospital||Tampa, FL||Y|
|St. Louis Children's Hospital||St. Louis, MO||Y|
|St. Mary's Medical Center||West Palm Beach, FL||Y|
|St. Vincent (Peyton Manning Children's Hospital)||Indianapolis, IN||Y||Y|
|Sutter Memorial Hospital||Sacramento, CA||Y|
|Texas Children's Hospital||Houston, TX||Y||Y||Y||Y||Y|
|The Alfred I. duPont Hospital for Children (Nemours)||Wilmington, DE||Y||Y||Y||Y|
|Children's Mercy Hospital||Kansas City, MO||Y||Y||Y|
|Johns Hopkins Children's Center||Baltimore, MD||Y||Y|
|The Univ of Arizona Medical Center (Diamond)||Tucson, Arizona|
|Univ. of Michigan Health System (Mott)||Ann Arbor, Michigan||Y||Y||Y||Y|
|UC Davis Children's Hospital||Sacramento, CA|
|UCSF Benioff Children's Hospital||San Francisco, CA||Y||Y||Y||Y|
|University of Chicago (Comer)||Chicago, IL|
|Univ of Florida Health Sciences Ctr - Gainesville||Gainesville, FL||Y||Y|
|Univ of Florida Health (Wolfson)||Jacksonville, FL|
|University of Iowa Children's Hospital||Iowa City, IA||Y||Y|
|University of Maryland Medical Center||Baltimore, MD||Y||Y||Y|
|University of Minnesota Amplatz Children's Hospital||Minneapolis, MN||Y||Y||Y|
|Univ of North Carolina Hospitals||Chapel Hill, NC|
|University of Rochester Medical Center||Rochester, New York|
|Univ. of Texas Health Science Center||San Antonio, TX||Y||Y|
|University of Virginia Health System||Charlottesville, VA||Y||Y|
|Univ of Wisconsin Hospital and Clinics||Madison, WI||Y|
|Wake Forest University Baptist Medical Center||Winston-Salem, NC||Y|
|West Virginia University Children's Hospital||Morgantown, West Virginia|
|Yale New Haven Children's Hospital||New Haven, CT||Y||Y|
All surgical procedures have a precise name, and you need to know it. Don't accept something descriptive like "we need to widen the aorta." Get the official name.
Every procedure will fall into a STAT category, a measure of surgical difficulty. Look up your child's operation on this list of STAT categories. Category 1 is the simplest and Category 5 is the most complex.
The 107 hospitals on this chart all confidentially report their mortality rates and other outcomes to the Society for Thoracic Surgeons, but only some of them allow this information to be made public on the society's website.
This data is the gold standard - the most important metric of all - for two reasons.
One, it doesn't just tell you a hospital's success rate, it tells you what experts think the hospital's success rate should have been based on how sick and fragile their patients were before surgery.
Two, the STS data is subject to audit to make sure hospitals are telling the truth. That's not the case with data on a hospital's own website.
The first column, labeled "#/Eligible," means the number of deaths compared to the total number of children who had surgery over a four-year period. For now, just focus on that larger total number - it's crucial.
Take that number and divide by four - that's the average number of surgeries the hospital did in one year, or the hospital's annual volume. To put that in perspective, high volume hospitals do more than 250 surgeries a year, medium volume hospitals do 101-250, and low volume hospitals do 100 or fewer.
Generally speaking, your baby is better off at a high volume hospital, as studies show they tend to have lower mortality rates, especially for more difficult procedures. It makes sense, as the surgical team gains valuable experience with each procedure. Also, smaller programs often don't have important resources, such as an intensive care unit just for children with heart problems and specially trained nurses.
"Most high volume programs achieve excellent results, but only some low volume programs achieve excellent results, especially for more complex operations," says Dr. Jeffrey Jacobs, chair of the Society of Thoracic Surgeons National Database Work Force.
Now move on to the "observed" column. This tells you the center's actual death rate by STAT category.
The "expected" column tells you what experts think the hospital's mortality rate should have been based on how sick their particular patients were going into surgery.
If the "observed" rate is higher than the "expected" rate, then the hospital has a higher death rate than expected. If the "observed" rate is lower than the "expected" rate, then the hospital has a lower death rate than expected.
For more information on how to read this chart, see this explanation from the Society for Thoracic Surgeons.
A check mark means the hospital reports its volume, which is the number of procedures it performs. No check mark means it keeps its volume a secret.
If the hospital you're considering has a check mark, go to the website and look for the volume. Sometimes it's reported for a year. If it's reported for more than a year, calculate the annual rate - for example, if the hospital reports a volume for four years, divide by four.
Now compare your hospital's volume to the national statistics mentioned earlier: More than 250 procedures a year is considered high volume, 100 and fewer is low, and anything in between is medium.
As we mentioned, higher volume hospitals tend to have higher success rates.
Children's hearts are not like adults' hearts.
Heart surgeons for adults spend much of their time doing just two types of procedures, coronary bypasses and valve replacements and repairs. But babies are born with more than 100 types of congenital heart defects. Just because surgeons are good at patching up holes in the heart - a relatively simple procedure - does not mean they have experience cutting and re-routing veins and arteries to create an entirely new cardiac circulatory system for a child born missing much of his or her heart.
If a hospital has a check mark in this column, look on its website to see if it gives its volume for the procedure your child needs. If it does, go to other hospitals with check marks to see how the volume at your hospital compares.
If your hospital doesn't list your child's procedure, ask your doctor how many times it's been performed at that hospital. Ask the same question if there's no check mark in this column.
Don't accept a vague answer - the surgeon knows the exact number and should share it with you. If not, think about looking for a new surgeon.
Now you can see if your hospital lists its mortality rate for the procedure your child will have, and how that compares to the national average as documented by the Society of Thoracic Surgeons.
If your hospital doesn't have a check mark in this column, or if there is a check mark but your procedure isn't listed, ask your doctor for the hospital's mortality rate for your procedure. Again, don't accept a vague answer. Hospitals know their mortality rates. Don't let them tell you the data will be confusing or misleading. It's their job to explain it to you.
If your hospital has a check mark in this column, you can see its mortality rates for the complexity level of your child's procedure. Most sites that list this information also include a national comparison, often called the "STS benchmark."
If your hospital doesn't have a check mark here, ask the surgeon what the mortality rate is for the complexity category of your child's procedure. Again, they know it and they should tell you.
If the hospital you're considering has a check mark in this column, that means it had at least two pediatric heart surgeons. If the hospital doesn't have a check mark, read on.
"Programs with one surgeon raise red flags in my mind," says Dr. Charles Fraser, chief of congenital heart surgery at Texas Children's Hospital in Houston. "No human being can be available all the time. What happens if that surgeon is unavailable? What's the backup plan? What happens in the middle of the night on Christmas Eve?"
Out of the 106 hospitals on this list, 32 have only one pediatric heart surgeon and so don't have a check mark in this column. If your hospital is one of them, start asking questions. These hospitals concern many experts, not just Fraser.
For the purpose of this chart, we defined a pediatric heart surgeon as having a certification in congenital heart surgery from the American Board of Thoracic Surgery or membership in the Congenital Heart Surgeons' Society. It's important to note that some well-respected pediatric heart surgeons have neither of these credentials, so if you don't see a check mark in this column, ask about a surgeon's background and how much time they spend operating on children compared to adults.
The vast majority of children's heart surgery programs report their data to the Society of Thoracic Surgeons. It's a great quality improvement tool, because the society lets hospitals know how they're performing compared to national averages. If your hospital doesn't report to the society, be wary.
Your baby deserves real answers. Actual data.
"We have a great success rate" or "we're one of the best in the country" just won't cut it.
"Push harder to get the information you need," says Jacobs, a professor of cardiac surgery at Johns Hopkins. "If you can't get that information from your doctor, consider going to another doctor."
By the way, many hospitals publicize a very low death rate, but that number is only meaningful if you know the total number of surgeries the hospital performs and whether those surgeries are at the same complexity level as the procedure your child needs to have, as a low death rate is expected with lower complexity operations, while higher complexity operations often have a higher death rate.
You can absolutely look elsewhere.
Insurance issues are always tricky, so let's break this down.
Many babies receiving heart surgery have Medicaid. It varies, but often Medicaid will pay for surgery anywhere within the state, and might allow you to go out of state if no hospital in-state has experience in a particular type of surgery.
For private insurance, it depends on your policy. But if your insurance company is restricting you to a hospital that doesn't have much experience with the surgery your child needs, start asking questions. How low is the volume at the hospital your insurance company wants you to use? How high is it at a different hospital? Gather your facts and make your case.
Surgeons will be the first to tell you that pediatric heart surgery is a team effort. A good surgeon isn't enough - find out if there's an intensive care unit devoted entirely to pediatric heart patients and if there are pediatric heart-focused nurses, anesthesiologists, and perfusionists. For more questions, see 10 ways to get your child the best heart surgeon.