Frequently Asked Questions About Congenital Heart Diseases

Because the heart and the systems it affects are so complex, some diseases are simple to understand and treat while others can be life-threatening, some perhaps even requiring multiple surgeries to resolve. The rule of thumb is to never assume any heart condition is minor, and always see a physician when any symptoms appear.

Each type of heart disease is unique, as is your child. Your specialist will help her understand what she can or should not do. Your main job as a caring parent is to support her and help her stick to activity guidelines that will let her live as fully and actively as possible.

Studies indicate that just under 1% of babies across all social, economic, and geographical boundaries will have some form of congenital heart disease. Most of these illnesses are thought to be passed to the fetus through the genetic code, but the specific gene(s) responsible have not been identified. An ultrasound can detect heart abnormalities prior to delivery.

Once your pediatrician refers you to University Hospitals Rainbow Babies & Children's Hospital, you’ll meet with one of our specialists who will take a thorough history and may recommend further tests. If your child needs surgery, he’ll meet one of our Child Life specialists who will help him understand what to expect if he comes to UH Rainbow Babies & Children’s Hospital’s Pediatric Heart Program.

The process is different for each patient, depending on the symptoms he or she presents, but generally your pediatrician will perform initial tests. If the symptoms and test results indicate a potential heart problem, your pediatrician will refer you to a Pediatric Heart Program cardiac specialist. When you come to us, one of our specialists will take a very detailed medical history and perform a thorough examination. If needed, she will have your child tested further to determine what may be the problem with his heart.

Most pre-operation studies are performed on an outpatient basis. You are welcome to be with your child – and be reassured that he’s being cared for by the best professionals in the finest facility in the region.

Although for safety reasons you can’t be in the actual operating room during the procedure, you are most assuredly encouraged to be close by at all times, night or day. UH Rainbow Babies & Children's Hospital has accommodations ready for you.

Whenever a procedure may involve pain and discomfort, each member of our team is solidly focused on minimizing it. We’re aggressive about treating and eliminating pain. Our philosophy is that there’s no excuse for excess discomfort in our young patients.

Yes. Many heart conditions in children respond well to medication and various forms of physical and lifestyle therapy. After thorough testing, your Pediatric Heart Program specialist will recommend the most effective course of treatment.

Every staff member at UH Rainbow Babies & Children’s Hospital is devoted to helping calm your child’s natural fear and anxiety. By the time an operation is scheduled, you and he will both have visited the facility, met some of the staff, and seen firsthand the equipment that might be involved during the operation. On the morning of the procedure, you’ll both meet the specific staff members who’ll be working with you – including people like our child-friendly anesthesiologist, who might do a few magic tricks as your child is drifting off to sleep.

At UH Rainbow Babies & Children’s Hospital, no child who needs help is turned away. Medicare pays the major share of the costs incurred by patients. Your insurance carrier may cover some or all of the remainder. If you have questions about finances, call the finance office.