What Congenital Heart Disease Means for Your Child

Congenital heart defects are the most common of all birth defects. But if your child is diagnosed with one, it feels like you're entering strange, uncharted territory. Instead of welcoming your newborn to a cozy nursery at home, you're glued to the hospital, immersed in a crash course on an unfamiliar condition such as ventricular septal defect, tetralogy of Fallot or hypoplastic left heart syndrome. Under pressure, you're deciding where to take your child for potentially life-saving surgery and ongoing care.

As a new U.S. News analysis shows, patients needing risky operations do better at high-volume hospital centers where more congenital heart surgery procedures are performed. Below, a top cardiac surgeon and parents who've been there provide insight on questions to ask and what you should look for when making these vital decisions.

[See: 10 Lessons From Empowered Patients.]

Dr. Charles D. Fraser Jr., the surgeon-in-chief and chief of congenital heart surgery at Texas Children's Hospital in Houston, emphasizes the importance of choosing centers with the most extensive experience in procedures for specific conditions. "Some of it is intuitive and some of it, quite frankly, is common sense," he says. "There are some data, also, that point to the reality that better outcomes are achieved at centers that do larger volumes of care."

Convenience of a location near home, or the desire to avoid a transfer, isn't a good-enough reason alone to choose a hospital for these types of conditions. "I usually challenge people who are making the decision based on a convenience factor, although convenience is certainly important," Fraser says. "But with many of these decisions, once they're made, you can't recover."

These kids require immediate care -- wherever they are -- when their symptoms first arise. But then the issue becomes whether they should be transferred to a children's heart center with more experience. If so, arrangements, including special ambulance transport, must be made.

Parents should look for a child-focused heart team practicing within a heart center, Fraser says. And, he says, parents should ask about the training, qualifications and 24/7 availability of the staff at the bedside.

"You want to know who's going to be taking care of your child," Fraser says. "That doesn't mean just at the time of the operation. It's the whole continuum of care. I usually have them ask some really hard questions, like, 'Who's there on Sunday morning at 3 a.m.?'"

Heart conditions can lead to complications in other parts of a child's body, including digestive-tract problems and growth and developmental delays. Therefore medical support extends beyond the heart team, Fraser points out. Other physicians, such as kidney and gastric specialists, are also critical members of the health care team.

Ask whether care providers are "borrowed" from adult care units, or dedicated to the children's heart team, Fraser advises. This team includes doctors and nurses on the pediatric and intensive care units, pediatric respiratory therapists and pharmacists, among others. Also, ask about staff in the surgical suite, such as surgeons, anesthesiologists, physician assistants and perfusionists -- health care providers in charge of the heart-lung machine during cardiac surgery. Well-established working relationships among operating room team members make a difference, Fraser says.

[See: 10 Concerns Parents Have About Their Kids' Health.]

Asking your doctor, "What would you do if this were your child?" is a good idea, says Amy Basken, co-founder and director of programs for the Pediatric Congenital Heart Association, or PCHA. "Doctors have inside knowledge," says Basken, a mother of three, including a son who was born with a heart defect.

Parents also need hard data about hospitals and surgeons performing what can be very complex procedures, Basken says. Such data empower parents to make these extremely difficult and time-sensitive decisions. Her group advocates for hospital data transparency around survival and other results.

The PCHA offers a guided question tool to help parents get crucial information. The following are just some of the recommended questions to ask about your cardiac center, the hospital stay and your child's long-term outlook:

-- How many procedures do you perform each year?

-- What is the survival rate for this type of procedure at the time of hospital discharge? After one year?

-- How do your results compare to other centers' results?

-- Do your surgeons have special training in congenital heart surgery? What other types of special training do your doctors and nurses have?"

-- How are family members included in the decision-making process?

-- How many days do you think my child will be in the hospital, before and after the procedure?

-- What are my options for when, where and how to deliver my baby? (For cases discovered during pregnancy.)

-- Do you have a cardiac intensive care unit, or CICU, that cares mainly for children with heart defects?

-- What are the expected long-term results for this heart defect and its procedure? What is my child's life expectancy ?

-- Thinking about how my child will grow and develop, what should I expect from him or her as a preschooler, school-age child, a teenager and as an adult?

[See: 10 Seemingly Innocent Symptoms You Shouldn't Ignore.]

Speak up throughout the course of your child's hospital stay, says Amanda Bond, publisher of the Pickett County Press, president of the PCHA of Tennessee and the mother of a 6-year-old son with a congenital heart defect.

"Never feel bad about asking to be a part of the care," Bond says. Some parents shy away from asking questions at first, she says, and don't realize it's not only OK, but their right. "You know your child, probably better than anyone, and you can pick up on things much more quickly in some cases," she says. That could be a simple behavior, like a baby being fussier than usual, or subtle changes in facial color.

"It really comes down to relationship," Bond says. "What type of relationship do you have with the people that are taking care of your child? Do you have a voice? Can you express that? Is it perceived? Is it received? Do they make you feel like you're part of the team?"

Lisa Esposito is a Patient Advice reporter at U.S. News. She covers health conditions, drawing on experience as an RN in oncology and other areas and as a research coordinator at the National Institutes of Health. Esposito previously reported on health care with Gannett, and she received her journalism master's degree at Georgetown University. You can follow her on Twitter, connect with her on LinkedIn or email her at lesposito@usnews.com.