What is congenital heart disease and how rare is it?
Congenital heart disease happens when someone is born with malformations or defects of the heart or the great vessels. It’s actually not that rare, approximately 1-100 children are born in the United States will have congenital heart disease and 25% of those children will have severe heart disease requiring some type of intervention within the first year of life. There are over 35 different types of congenital heart disease.
How do you diagnose it and what kind of treatment options are available?
Currently, in the United States, most of the diagnosis occurs during pregnancy. Especially for critical disease, doctors use fetal ultrasounds to find the defect. Sometimes babies are born and do not have a diagnosis of congenital heart disease until they present with low oxygen levels or difficulty breathing or heart murmurs heard by their pediatrician. Dr. Mery says there are different ways of diagnosing congenital heart disease throughout life.
In terms of treatment, he says it really depends on what type of disease and the severity of the condition. Sometimes, treatment can involve simply observation or interventions such as catheters or even open heart surgery.
Are children the only ones who can be diagnosed?
Congenital heart disease can be diagnosed later in life. Most patients are children at the time of diagnosis, but sometimes especially those with malformations, can go into adulthood before receiving a diagnosis. Interestingly, clinicians have gotten so much better at diagnosing and treating these diseases that children who used to not survive into adult hood, are now doing just that. Currently, in the US there are more adults living with congenital heart disease than children.
What kind of support can families get at Texas Center for Pediatric and Congenital Heart Disease?
It is very stressful for families with a child going through treatment. It’s why the Texas Center for Pediatric and Congenital Heart Disease team is focusing efforts on the whole child, whole family part of the program. In addition, to the general support patients and families receive from the pediatric cardiologists and specialists, they are building a robust team of psychologists, child-life specialists, social workers that help support families during difficult times. As patients, and their families, come into the program, they receive some psycho-social assessments to help the team identify needs and they can provide the child and/or the family the therapy or any additional support require. The goal is not only to treat the patient, but to help them through the whole process.