Talking with physicians can be overwhelming and confusing. We’re hoping that these questions can help guide you to understanding your child’s condition and the multiple facets included in their treatment.
1) How is my child’s heart structure different from normal?
2) What functional problems does this difference cause?
1) What are the benefits of surgery?
2) What is the time frame for performing surgery (ie-when does it need to be done)? If I want a second opinion, how much time do I have to get one?
3) Are second opinions “built-in” to the system? Is there a conference where my child’s information will be presented to all the cardiologists and surgeons so that I get the benefit of their opinions?
4) What are the risks of surgery?
5) What are the expected long term results and are there any indicators for future surgery?
6) What are the alternatives to the proposed surgery?
1) What is the experience of the surgeon regarding level of skill with the specific defect and procedure?
2) How many children, per year do you operate on under 1 year of age? 1 month of age?
3) What is the overall success rate/mortality at institution for children undergoing heart surgery?
(Remember that success rate/mortality may reflect the types of cases a center does as well as their expertise. Centers that specialize in “high risk” cases may have both greater expertise and higher mortality rates.)
4) What is the success rate for my child’s specific defect?
5) Who assists during surgery?
6) Many pediatric heart centers incorporate cardiologists and surgeons in training as members of the team. (Doctors who are training to become a cardiologist are often called “Fellows”. Fellows are already certified pediatricians.) In what capacity do Fellows perform in the following areas?
7) Does this heart center have a Cardiac Intensive Care Unit or an Intensive Care Unit? (If the hospital does not have a Cardiac Intensive Care Unit, ask if they have Cardiac Intensivists on staff.)
8) Do you use a group who specializes in pediatric cardiovascular anesthesiology?
1) What is my child’s expected length of hospitalization and recovery at home?
2) What are the most common complications expected with this procedure?
3) What are rare the complications?
4) Nursing care – How many kids per nurse in the CCU/ICU and Step Down Unit?
5) Are there any research studies my child may or may not be eligible for?
1) Does someone experienced in cardiology care for my child during his/her length of stay?
2) How many kids per nurse in the step-down unit?
3) Does a member from the cardiac team follow up only in the CICU or also in the Step-Down unit?