Frequently Asked Questions

Below are common questions that the Pediatric Inherited Cardiovascular Disorders program team at Stanford Medicine Children’s Health hears from parents and families. We hope you will find this information helpful, and we welcome any other questions you may have. 

As part of your child’s genetic evaluation, our genetic counselors will discuss what genetic tests are available for the condition that is running in your family and how such tests may benefit your child and other at-risk family members. Genetic testing can be done from a blood or saliva sample, which is sent to a genetic testing laboratory for analysis. Often, a saliva kit can be sent to your home for sample collection (no pokes!). Results are typically ready in three to four weeks. If a genetic change that explains your child’s heart disease is identified, we can also assist with getting other at-risk family members tested.

Genetic counseling is typically covered by medical insurance. However, insurance companies have different policies about which tests are covered and by how much. We recommend that you check with your child’s insurance company to learn about specific coverage and whether you will need a referral to visit a genetic counselor. You can ask your child’s insurance provider if they cover the CPT billing code for genetic counseling, which is 96040. For a telemedicine visit, the CPT code is 96040. If you are seeking preauthorization, please ask for six units (three hours total) to ensure coverage for follow-up visits.

Whenever possible, we prefer to use genetic testing labs that check your child’s insurance coverage prior to running the test, alerting you to any significant out-of-pocket costs and allowing you to cancel the test if you decide the expected cost is too high.

Our genetic counselors are health care professionals with specialized graduate training in the areas of medical genetics and counseling. They work with children and families to provide simplified education around the genetics of inherited heart conditions, and they assist with ordering, interpreting, and explaining the results of any genetic testing performed. All of our genetic counselors are specifically trained in pediatric inherited cardiovascular diseases and have deep expertise in partnering with family like yours.

After your child’s appointment, your Pediatric Inherited Cardiovascular Disorders program cardiologist, as well as your assigned genetic counselor, will write letters summarizing what was discussed at the visits. These letters are sent to you and to your child’s referring physician. To help communicate with your extended family members, our genetic counselor can also write a letter that describes what heart condition they are at risk for, what cardiology screening or medical evaluation they should have, and what genetic testing is available.

If someone in your family dies suddenly before the age of 50, particularly when a cardiac cause is suspected, there are time-sensitive steps that you should take immediately. These steps will increase the chance that your family can learn whether a hereditary heart disease was the cause of death and if other family members are at risk. The most important steps you should take right away are to request an autopsy and ask the coroner/medical examiner to save a blood sample or fresh-frozen tissue sample from the autopsy for possible genetic testing. Please see the Sudden Cardiac Death page for additional information on how to prepare for your first meeting with us in this situation.

If your child is a new patient to our Pediatric Inherited Cardiovascular Disorders program but is an existing patient of our Betty Irene Moore Children’s Heart Center, you can make an appointment by calling (650) 262-3341. If your child is an entirely new patient for us, please ask your child’s doctor for a referral. Your child’s doctor can find referral instructions on the Stanford Children’s Referral Process and Forms page. When your child is seen by our Pediatric Inherited Cardiovascular Disorders program, you will likely see both a cardiovascular genetic counselor and an inherited cardiovascular disorders cardiologist at your visit.

While our genetic counselors help identify a genetic cause of your child’s heart condition, our pediatric cardiologists can inform you about your child’s heart condition from a clinical standpoint and can help coordinate personalized care. Armed with the exact genetic cause, cardiologists can rule out other heart conditions, identify rare conditions, and ultimately identify targeted treatments—in other words, just the right care that your child needs. Our cardiologists are specialized in inherited heart and vascular conditions, and they also team up with cardiologists from our other programs within the Betty Irene Moore Children’s Heart Center who are hyperspecialized and dedicate their days to caring for children with the same needs and conditions as your child. In this way, your child is provided the best heart care possible.

Our Pediatric Inherited Cardiovascular Disorders program provides comprehensive services, including patient and family genetic counseling and genetic testing, cardiac screening for other at-risk family members, and care coordination with specialty heart teams for your child’s heart or vascular disorder. Our genetic counselors and cardiologists have deep expertise in inherited heart diseases, meaning that they fully understand your child’s genetic test results and are able to help you understand the implications for your child and your whole family. We also coordinate with the Center for Inherited Cardiovascular Disease at Stanford Health Care (the adult hospital) to help empower you to take positive steps to keep your whole family healthy. Importantly, we offer access to the cutting-edge research and knowledge of all Stanford Medicine.

During your child’s appointment, our pediatric cardiologist and genetic counselor will work together to address the following topics:

  • Discussion of your child’s diagnosis, including:
    • Suspected underlying cause.
    • How heart conditions can be inherited (passed from parent to child).
    • Risk to other relatives and recurrence risk for future children.
  • An overview of your child’s genetic testing options and possible outcomes.
  • A thorough assessment of your family’s health history (30 to 45 minutes).
  • Cardiology screening recommendations and coordination of care for at-risk family members.

Depending on your child’s reason for referral and his or her medical history, the doctor may recommend the following tests: