Whether it’s planned or an emergency surgery, it can be worrisome to hear your child needs an operation. However, researching the surgeon, the procedure and asking the right questions may help put you at ease.
Doctors with the Johns Hopkins All Children’s Heart Institute have continued to work with some of the world’s leading heart experts to improve care by making information on heart procedures public and easily understandable for families and patients with congenital and pediatric heart disease. The goal is to make sure all families are able to make informed decisions about their child’s health care.
While there are no laws requiring surgeons to report volumes and outcomes (the number of surgeries and success rates) of their pediatric heart surgeries, many hospitals in the U.S. aim to be transparent with families. The Society of Thoracic Surgeons (STS) also encourages cardiothoracic surgeons to voluntarily report their success rates that are documented in the STS Congenital Heart Surgery Database. As of early 2016, out of the 125 pediatric heart surgery programs in the U.S. 120 of these programs submit their data to the STS and almost half publicly report this information on their website.
However, sometimes the information that surgeons report is filled with medical jargon and not easily understandable for the average parent. Doctors with the Johns Hopkins All Children’s Heart Institute urge families to speak one-on-one with their surgeon to learn more about the success rates associated with pediatric heart surgery.
Start by asking the following questions:
- What is the specific name of the surgery?
- How often does the particular doctor perform the procedure?
- What is the typical survival rate of this procedure?
- What is your hospital’s survival rate for this procedure?
- What are the short-term/long-term risks and/or effects of this procedure?
- Are there any developmental or social effects my child may experience after surgery?
- How long will my child have to stay in the hospital after surgery?
- Will my child have to have any follow-up procedures?
- Are there any support groups you can connect me with for more information?
Decisions about your child’s health care may be the most important decision you make so it’s important to research and ask your child’s doctor those tough questions to ensure your child is getting the best care possible.