Until your child is diagnosed with a congenital heart defect (CHD), you may have never given much thought to what you know or don’t know about the subject. Parents can face a diagnosis with preconceived notions about CHD that are simply not true. Sibley pediatric cardiologist Ben Toole, MD, talked with us to debunk some of the common myths and fears that surround CHD.
Myth: Many children who are born with a heart defect do not survive into adulthood.
This may be the No. 1 fear that grips parents when they hear their child has a CHD, but it’s untrue.
That is a massive misconception,” Dr. Toole said. “By far, most kids with CHD survive well into adulthood and live normal, long and healthy lives. Most forms of CHD in children are minor forms that will not have long-term effects on the duration or quality of life.”
Myth: Congenital heart disease means you can’t have an active life or a normal childhood.
Not true, and in fact, there are good examples of people with CHD who are world-class athletes including Olympic snowboarder Shaun White. White has a history of Tetralogy of Fallot and has undergone three operations to repair his heart, yet obviously lives a very active life.
“95 percent of kids with CHD will be fully active in any activity they want to do,” Dr. Toole said. “A small percentage will have some limitations or restrictions, but we can typically find things they enjoy and like to do. In fact, we want these patients to be active because it reduces their risk of obesity and hypertension, it relieves anxiety and it encourages teamwork and friendships – all excellent benefits of exercise.”
Myth: A surgery or procedure to correct CHD as a child means that the person is “fixed” or “cured” and will not need further intervention.
Some CHDs are more common and minor and may not require surgery or intervention, but some will.
“In many of our patients with complex CHD, the patient will require a surgery or cath-based intervention, and in many instances, multiple interventions during the course of their lifetime,” Dr. Toole said. “Even kids whose heart disease has been amenable to a complete repair should see a cardiologist regularly throughout their lives to make sure they don’t develop complications.”
Myth: All heart operations require open heart surgery.
Depending on their nature and severity, many CHDs can be repaired via a catheter through an arm, leg or neck. For instance, in the past, a child would have to undergo open heart surgery to close a secundum atrial septal defect (ASD), but the development of transcatheter based ASD Device Closure is now regarded as just as effective with lower risk of complications and a decreased hospital length of stay, with an almost 100 percent success rate in suitably selected patients.
“When interventions can be made by catheter, such as in secundum ASDs and PDAs, the patients typically stay overnight and go home the next day,” Dr. Toole said. “They can go back to their normal activities in a few days.”
Myth: If my child is not turning blue, they don’t have heart disease.
“Many serious types of heart disease do not result in abnormal oxygen saturations and cyanosis,” Dr. Toole said. “The presence of normal saturations should not eliminate the need for cardiology evaluation in patients who are having other concerning signs or symptoms.”
Myth: If my child is showing no symptoms, they cannot have heart disease.
Families may assume that if their child doesn’t show the common symptoms of heart disease, they don’t have it, but people can be entirely asymptomatic and still have significant heart disease.
“Even when a child is asymptomatic, CHD can picked up based on abnormal exam findings, such a murmurs, abnormal EKG findings or based on a concerning family history of heart disease, such as if there is a family history of multiple children or young adults with heart disease,” Dr. Toole said. “By catching it early, we hope to prevent or at least reduce the risk of serious complications.”
Myth: My child is having chest pains. Does he have heart disease?
The chest is a complex system, particularly in active, growing children. Chest pain in an otherwise healthy child does not indicate heart disease.
Over 99 percent of kids with chest pain do not have cardiac disease and the chest pain is due to other things such as musculoskeletal pain, GERD, asthma, etc.,” Dr. Toole said.
Myth: I can’t ask my child’s doctor questions unless I have an appointment.
Families will often come to see their child’s cardiologist, leave the appointment and then have questions, but because they are reluctant to ask, their questions go unanswered until their next visit.
“I always encourage my families to go home and talk over our visit and what we discussed,” Dr. Toole said. “If questions come up after talking to your child or other family members – even things we talked about at the child’s appointment but you just want to hear again — write them down and call us. We want everyone to feel comfortable with the information we provide.”
For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.
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