Frequently Asked Questions
About CHDs
What is my expected life expectancy?
It varies greatly depending on the complexity of the heart disease. Please discuss with your pediatric cardiologist regarding the expected life expectancy of your specific lesion.
Will my child with CHD always have to see a cardiologist?
Yes, and once your child reaches adulthood, he/she will transition over to a cardiologist who specializes in Adults with Congenital Heart Disease (ACHD). Even after the repair, lifelong follow up is important.
Will I need surgery again in the future?
Some kinds of heart disease may need a surgery or procedure in the future. Please discuss with your cardiologist regarding your child’s specific kind of heart disease.
Growth & Development
How will puberty and physical growth affect my child with CHD?
In certain conditions, puberty may be delayed and growth affected. This depends on a variety of factors. Your cardiologist will be able to answer this question.
Am I able to get my driver's license?
Most patients with CHD are able to obtain driver’s license. However, there may be some restrictions. Your cardiologist will be able to address this question and also fill out the required DMV form.
Will I be able to work/go to college?
In most cases, yes.
Where can we find healthy tips for living with CHD?
Please discuss this with your pediatric cardiologist.
Is it safe to play competitive sports?
Yes, for the most part. However there may be certain restrictions especially with contact sports and competitive sports. This depends on the complexity of the heart disease, the specific kind of heart disease, and your current heart status. Please discuss with your cardiologist the specifics of the restrictions, if any.
Are there driving restrictions for people with CHD?
Most patients with CHD are able to obtain driver’s license. However, there may be some restrictions. Your cardiologist will be able to address this question and also fill out the required DMV form.
Is it safe to have children/get pregnant? What's the risk of passing on CHD to baby, if so?
There may be some risks involved with pregnancy. You will work with a cardiologist who specializes in pregnancy and heart disease closely before, during, and after pregnancy. The risk of having a child with heart disease if the mother has CHD is about 3-5%.
Parenting
How can I help my child explain to others what CHD is?
Age appropriate education is important. The older your child gets he can learn more and eventually take ownership of his/her own health.
Support
What support resources are available?
There are several support groups available. Our social worker can help you with this.
What resources are there to help with the financial cost of CHD medical care?
Our social worker can help with this issue.
Where can I find access to a social worker?
Our pediatric cardiology program at PCH has a full time social worker dedicated to cardiology. Please contact your cardiologist’s office for details.
Where can I find out how much it will cost for medical care with my insurance?
Calling your insurance company would be a good first step.
Transition of Care
How long can I be seen here by my pediatric cardiologist?
You can generally be followed by your pediatric cardiologist until the age of 18-21, and sometimes longer.
Will I be able to get health insurance/life insurance?
Yes, in most cases.
How can I prepare my child with CHD to assume care for his/her own health once he is an adult?
Age appropriate education is important. As your child gets older, he/she should be encouraged to take more and more ownership of his/her health.
Who do I transition to once I turn 18?
You will transition to a cardiologist who specializes in Adult Congenital Heart Disease (ACHD).
When do I switch from Primary Children's Hospital to adult hospitals and doctors?
Generally between the ages of 18 and 21, sometimes later depending on individual needs.
Can my child go to any cardiologist he/she wants?
Yes, but it is good to follow with the same cardiologist who is familiar with your child’s history. Occasionally in urgent situations he/she may see the next available cardiologist.
Other
What do I need to know before I have my wisdom teeth removed?
Depends on your specific heart disease. Please discuss this with your cardiologist regarding recommendations for sedation, anesthesia, antibiotic prophylaxis, etc.
Will flying affect my child with CHD?
It is safe for the most part, barring some exceptions. Please discuss this question with your pediatric cardiologist.
How does air quality and altitude affect my child with CHD?
There is evidence that bad air quality has adverse health effects. Most children can tolerate altitude barring some exceptions. Please discuss this question with your pediatric cardiologist.