Steps to Take in the Event of a Sudden Cardiac Death in Your Family

If there has been a sudden, unexpected death of a child or adult under the age of 50 in your family—from a known or suspected heart condition—this information is for you. We understand that it is an extremely difficult time for you and your family. While it may seem like a lot to process right now, it is important for the health of the rest of your family to act swiftly to determine if an inherited heart condition or blood vessel disorder was the cause of death.

The following information outlines steps you should take as soon as possible after the death:

1. Take these time-sensitive actions immediately following a sudden cardiac death

Taking these steps will greatly improve the chances that a specific cause of cardiac death can be identified:

• Request an autopsy, including histological examination (examining heart tissue under a microscope by an expert cardiac pathologist). Sudden cardiac death may be the first sign of a hereditary heart condition in your family.
• Ask the coroner or medical examiner to save a blood sample or fresh-frozen tissue sample for genetic testing.
• Consider alternative sources of DNA before they are discarded. For example, if your family member died suddenly at a hospital, the hospital’s clinical lab may still have tubes of their blood—but will discard these after only a few days.
• Gather cardiac rhythm strips from first responders before they are discarded.

If the treating health care provider, coroner, or medical examiner needs guidance on how to perform these tasks, they can find it through the National Society of Genetic Counselors. They can also email postmortem@nsgc.org, and a genetic counselor with expertise in postmortem genetic testing will reply within 48 hours. The National Association of Medical Examiners has published recommendations with detailed information about saving samples for postmortem genetic testing.

Our Pediatric Inherited Cardiovascular Disorders program can guide you when an autopsy fails to identify the cause of a sudden death. You can also contact the national SADS Foundation for sudden arrhythmia death syndromes, at (801) 948-0654, with questions.

2. Make an appointment with a genetic counselor

Call us for an appointment at (650) 262-3341. Cardiovascular genetic counselors in our Pediatric Inherited Cardiovascular Disorder program at Stanford Medicine Children’s Health specialize in helping families who have experienced the sudden cardiac death of a young relative (under age 50) and connecting children in the family with a pediatric cardiologist for screening. (Adult family members are cared for by genetic counselors and cardiologists in the Stanford Center for Inherited Cardiovascular Disease at the adult hospital.) By gathering as much information as possible, we can better assess if a genetic condition was the underlying cause of a family member’s sudden death. This information includes:

• Taking a detailed three- to four-generation family medical history.
• Identifying family members who are most at risk for a hereditary heart condition and recommending appropriate cardiology evaluations for them.
• Advising your family about how to collect cardiology records, death certificates, and autopsy reports for family members with suspicious symptoms.
• Choosing the most appropriate genetic test for your family and coordinating genetic testing.
• Working with the coroner or medical examiner to do genetic testing on autopsy samples from your deceased family member, if appropriate.
• Sending autopsy samples from your deceased family member for DNA extraction and DNA banking so that additional genetic testing remains possible in the future.
• Connecting your family with patient advocacy groups and other sources of support.

3. Discuss your family medical history with relatives

Certain red flags in a family history can indicate a possible hereditary (genetic) heart condition. Ask your family members if anyone in the family has experienced the following. Be sure to ask how old they were when the event occurred.

• Heart attack or cardiac arrest (especially before age 50).
• Fainting episodes (especially with exercise, loud noises, or strong emotion or startle).
• History of coronary artery disease, stents, or coronary artery bypass surgery (especially before age 50).
• Unexplained seizures.
• Palpitations, chest pain, or shortness of breath.
• Heart murmur.
• 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).
• Implantation of a pacemaker or implantable cardioverter defibrillator (ICD) (especially before age 50).
• Aortic aneurysm.
• Very high LDL cholesterol (hyperlipidemia).
• 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, or recurrent miscarriage.
• Accidental death (a drowning of someone who knew how to swim or an unexplained single-car accident).
• Other sudden, unexplained death of a seemingly healthy person (especially during exercise or sleep, and especially before age 50).

4. Gather the deceased family member’s medical records

It is particularly important to gather records for your family member who died suddenly. Besides asking for a complete autopsy report with cardiac pathology and toxicology results, request:

• Emergency room and hospital records from the day of their death.
• Prior cardiology records (including original electrocardiogram [EKG] tracings and a disc with images from the most recent echocardiogram or cardiac MRI).
• Medical records from their primary care physician.

5. Get medical records for any family member with a suspicious history, and have at-risk family members undergo cardiology screening

These evaluations are important for two reasons:

• They could help identify the underlying cause of the sudden death.
• They may protect your other family members by diagnosing a heart condition that needs treatment.

Any relative, no matter how distantly related, should be evaluated by a cardiologist if they have suspicious symptoms (palpitations, dizziness, chest pain, shortness of breath, fainting, seizures, or childhood deafness).

How to request family medical records

• Cardiology records. Medical records can be requested directly from the doctor’s office or hospital where the patient was seen. You will need to make your request in writing. You can use this form to have a copy of your records sent directly to us prior to your appointment with us.
  If you already have a copy of the records, you can fax them to us at (650) 497-8422 (send them to the attention of the Pediatric Inherited Cardiovascular Disorders program team). Please be sure to include the name of the patient we will be seeing on your cover sheet.
• Death certificates. These can be ordered through the county where the death took place. Often, death certificates can be ordered online through an organization such as VitalChek. A death certificate is helpful because it lists a family member’s official cause of death, and it tells us if an autopsy was performed.
• Autopsy reports. These can be ordered through the coroner’s office for the county in which the death took place.

While they are hard to carry through when you are grieving, these steps might save the life of another family member.