How to Prepare for Your Child’s Cardiovascular Genetics Appointment

We will ask you detailed health information about both sides of your child’s family tree, including:

• Your child.
• Yourself and his or her other parent.
• Your child’s brothers and sisters (including half-siblings).
• Your child’s aunts and uncles.
• Cousins.
• Your child’s grandparents and great-grandparents.

• Their current age, or their age at death and the cause of their death.
• Their medical condition, and at what age each condition first appeared.

It may be helpful to ask your extended family members if anyone has experienced the following and, if so, how old they were when the event occurred.

• Heart attack (cardiac arrest or myocardial infarction, especially before age 50).
• Fainting episodes (especially with exercise, loud noises, or strong emotion or startle).
• Unexplained seizures.
• Palpitations, chest pain, or shortness of breath.
• Heart failure (especially before age 50).
• Enlarged heart or thick heart.
• Stroke or abnormal blood clots (especially before age 60).
• Heart surgery (valve replacement, myectomy, heart transplant, or other).
• Need for a pacemaker or implantable cardioverter defibrillator (ICD) (especially before age 50).
• Born with a hole in the heart or another heart problem.
• Childhood deafness.
• Infant death, sudden infant death syndrome (SIDS), late-term miscarriage, or stillbirth.
• Accidental death (a drowning of someone who knew how to swim or a single-car accident).
• Other sudden, unexplained death of a seemingly healthy person (especially during exercise or sleep, and especially before age 50).

Our Family History form will help you collect this information prior to your first appointment. We may also send you an online survey that asks questions about your child’s personal health history and your family’s history of disease.

Getting an idea of your family’s heart history helps us better care for your child. Be sure to bring copies of any medical records, death certificates, or autopsy reports you have that relate to a possible hereditary heart condition in your family. That way, our cardiologist and genetic counselor can review these with you during your appointment.

After we draw out your family tree, we may identify additional family members whose records it would be helpful to have.

Cardiology records can be requested directly from the hospital or doctor’s office where your family member was seen, using this form. If your family members already have a copy of their records, they can scan and email them to us at picd@stanfordchildrens.org or fax them to our Betty Irene Moore Children’s Heart Center at (650) 724-4922. (Be sure to indicate your child’s name on the fax cover sheet and send the records to the attention of the Pediatric Inherited Cardiovascular Disorders program team.)

Yes, this can be a good idea. Your and your child’s visit with us will include a discussion of any heart disease symptoms or sudden deaths in the family, and it will involve discussions of your child’s health risks and also risks to other family members. If you are concerned that these topics will be scary for your young children, or if you can focus better on the discussion without children in the room, your companion can take them to the waiting room or a nearby play area.

You might suspect one of the following inherited heart conditions in the given situations:

Inherited lipid disorder

• A family history of premature coronary artery disease and/or heart attacks at early ages (men < 50; women < 60).
• Elevated LDL-C levels (untreated):
  • Adults ≥ 190 mg/dL
  • Children ≥ 160 mg/dL
• Elevated Lp(a):
  • > 50 mg/dL (125 nmol/L)
• Elevated triglycerides:
  • >500 mg/dL

Congenital heart defects

• Several of your family members have a congenital heart defect.
• You and/or your child have an isolated heart defect on the left side, including:
  • Coarctation of the aorta.
  • Hypoplastic left heart syndrome (single ventricle anomaly).
  • Aortic stenosis.
  • Bicuspid aortic valve.
  • Shone complex.

Cardiomyopathy and heart failure

• Family members have had heart failure at young ages (< age 60).
• Several family members have had an enlarged heart, a weak heart, a “thick” heart, or cardiomyopathy.
• A family member with heart transplant.
• Unexplained sudden cardiac arrest or sudden death (especially under age 50).
• Unexplained fainting and/or fainting with exercise.

Arrhythmias

• Unexplained sudden cardiac arrest or sudden death (especially under age 50).
  • Unexplained fainting and/or fainting with exercise, stress, or startle.
  • Unexplained seizures, not responsive to medication.
• History of arrhythmias (atrial fibrillation, ventricular tachycardia) or ablation procedures.
• Family members with a pacemaker or defibrillator (ICD) at a young age (under age 50).

Our cardiologists and genetic counselors are happy to answer any questions you may have, so feel free to bring a list of questions, and tell us what you most hope to accomplish during your child’s cardiovascular genetics appointment.

We are also here to provide support to help you and your family cope with emotions that this information brings, as well as the challenging questions of how the diagnosis of an inherited condition may impact your child or other members of your family in the future.

And we are here to actively help coordinate your child’s care with a specialty heart program at Stanford Medicine Children’s Health designed specifically to meet your child’s care needs.