Frequently Asked Questions
About CHDs
What are the treatment options?
There are several treatment options depending on the kind of heart disease. Please talk to your pediatric cardiologist regarding what is best for your child.
Is it hereditary?
Some of the CHDs can be inherited. There is generally not one specific gene, but it is a combination of factors.
What is life expectancy?
It varies greatly depending on the complexity of the heart disease. Please discuss with your pediatric cardiologist regarding the expected life expectancy for your child’s specific lesion.
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.
What caused the CHD? Is it something that could have been prevented?
Some of the CHDs can be inherited. There is generally not one specific gene, but it is a combination of factors. There is nothing you could have done to prevent your child from having CHD.
Is correction able to be done here or is another facility better equipped to provide care?
Almost all of the surgeries and procedures can be performed at Primary Children’s Hospital.
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.
Growth & Development
Can my child with CHD participate in 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 child’s current heart status. Please discuss with your cardiologist the specifics of the restrictions, if any.
Are vaccinations safe for my child with CHD?
Yes, and it is recommended. Your pediatric cardiologist will be able to let you know if there are special exceptions.
What do I need to know before my child with CHD goes to public school?
You will need to discuss with your cardiologist and primary care physician regarding any special accommodations.
Can my child with CHD participate in PE?
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 child’s current heart status. Please discuss with your cardiologist the specifics of the restrictions, if any.
What are the developmental effects of CHD, socially and physically?
A lot of children with CHD do well at school. However there may be some developmental concerns related to CHD. There is a neurodevelopmental clinic associated with pediatric cardiology who completes assessments and offers recommendations.
Is it safe to play contact sports?
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 child’s current heart status. Please discuss with your cardiologist the specifics of the restrictions, if any.
Can I put my child with CHD in daycare?
Yes, unless there are special needs which the daycare will not accommodate.
When should my child with CHD not go to school?
Generally not when there are ongoing health issues.
Will CHD affect my child's ability to do well in school?
A lot of children with CHD do well at school. However, there may be some developmental concerns related to CHD. There is a neurodevelopmental clinic associated with pediatric cardiology who completes assessments and offers recommendations.
Where can we find healthy tips for living with CHD?
Your pediatric cardiologist will be able to help you with this question.
Parenting
What can we do (as parents) to provide our child with the best possible care at home?
Following recommendations from your pediatric cardiologist is important. Unless there are special precautions, he/she should be treated as normally as possible.
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.
Is it okay to take them out in public? What precautions need to be taken?
Yes, absolutely. If there are special precautions in certain circumstances, your cardiologist or PCP will advise accordingly.
Support
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.
What are the support resources available?
There are several support groups available. Our social worker can help you with this as well.
What resources are there to help with the financial cost of CHD medical care?
Our social worker will be able to help you with this aspect.
Other
Can I use essential oils on my child with CHD?
Yes.
What do I need to know before taking my child with CHD to the dentist?
Regular dental care is important. There are certain kinds of heart disease where antibiotics may be recommended prior to dental care. Please discuss with your cardiologist regarding the details.
How does air quality and altitude affect my child with CHD?
There is evidence that bad air quality can have adverse health effects. Most children can tolerate altitude barring some exceptions. Please discuss this question with your pediatric cardiologist.
Can I pierce my child with CHD's ears?
Depends on the exact nature your child’s heart disease. Your pediatric cardiologist will be able to answer this question.
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.
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.