Parents must make tough choices when finding out their child has a heart defect
Not all kids' heart surgeons are created equal
Understand your child's heart defect before seeking a surgeon
Every year, thousands of parents get a shock when they go in for a routine ultrasound during pregnancy: Their child has a severe congenital heart defect.
That means some tough choices. Some defects are so severe that parents decide to terminate the pregnancy. If they choose to keep the baby, they have to pick where to have surgery or surgeries (many of these babies need several procedures over the course of many years).
The first thing for parents to know is that operating on an organ the size of a newborn’s fist with vessels as small as a piece of spaghetti requires great skill and experience. This isn’t the same thing as getting your child’s tonsils out.
Statistics show not all pediatric heart surgeons are created equal. Experts advise against automatically going to the one suggested by your obstetrician. The obstetrician might be sending you to someone because he or she is a friend or because his colleagues send patients there.
Instead, they suggest looking closely at different programs. Here are some tips:
1. Get educated
You can’t ask good questions if you don’t understand your child’s heart defect, many of which are quite complicated. There are lots of good resources out there, including the Centers for Disease Control and Prevention and the National Library of Medicine.
Kristen Spyker, whose 3-year-old son Logan has a congenital heart defect, also recommends purchasing a copy of “The Illustrated Field Guide to Congenital Heart Disease and Repair,” which she says gives great explanations for heart defects and surgeries. She found that many nurses had it on hand at her son’s hospital.
2. Check hospital rankings
While not perfect, heart surgeons say this national ranking of children’s heart surgery programs is a good place to start.
3. Get data
Ask a surgeon how many times she’s done the procedure your child will need and how many deaths and complications she’s had.
Generally speaking, surgeons and hospitals that do more of a certain type of surgery tend to have better success rates. For more explanation, see this article published by the University of Michigan Risk Science Center.
When asking questions, be very specific, advises Spyker, who started an online organization called The Heterotaxy Network.
For example, if your child needs to have AV canal repair, don’t ask about the surgeon about his experience with valve repairs in general. If your child has a particular condition, such as Down Syndrome, find out about the surgeon’s experience doing this procedure on children with that condition.
Be aware that sometimes mortality and complication rates can be misleading if a hospital takes on complicated, high-risk patients who tend to have worse outcomes.
4. Be wary of places that keep statistics a secret
If you don’t get specific answers to your questions, that’s a red flag, many experts advise.
“I wouldn’t go to an institution that wouldn’t provide specific data,” said Dr. Charles Fraser, chief of congenital heart surgery at Texas Children’s Hospital. “And if you get a patronizing response like, ‘We’ve done really well,’ that’s not sufficient.”
5. Think twice about programs with one surgeon
Pediatric heart programs generally have two to four surgeons, but some have only one, or only one who does complicated surgeries.
“Programs with one surgeon raise red flags in my mind,” Fraser said. “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?”
6. Ask about the whole team
Doctors will often tell you that pediatric heart surgery is a team sport. You can have a great surgeon, but your child could be in trouble without nurses and other staff who focus on pediatric heart patients.
Fraser advises asking whether there’s an intensive care unit devoted entirely to pediatric heart patients as well as pediatric heart-focused nurses, anesthesiologists, and perfusionists.
“Keep asking questions until you know whether a hospital is dabbling in pediatric heart cases or is really committed to them,” said Fraser, the president of the Houston chapter of the American Heart Association.
7. Be wary of doctors who discourage a second opinion
Fraser has lost count of the number of parents who call him from another hospital, whispering into their cell phones that they need his help. They’re afraid to speak out loud because the hospital they’re in has discouraged them from seeking a second opinion.
His message: Don’t be afraid. An ethical hospital would never discourage you from getting a second opinion.
“We realize some families have a difficult time getting over the white coat awe,” he said. “But it’s OK to ask hard questions. We do it in other areas of our lives.”
8. Consider traveling
Many families that don’t live near a top center decide to travel to one. It’s not always easy, especially since heart babies sometimes spend months in the hospital, but many large centers have services to help out-of-towners.
It can sometimes be a struggle to get insurance to pay for a hospital outside your area, but large centers have experience making it work.
9. Ask advice from parents who’ve walked in your shoes
This one is particularly important. Other parents have the inside scoop on hospitals – consult with them!
10. Remember that you’re in charge
Ultimately, it’s up to you to arrange the best medical team for your child.
“You have one shot to get a good heart repair,” Spyker said.