What do I do if a Family Member Dies Suddenly?

Having a family member die suddenly can bring up many questions, especially if it happened unexpectedly. Sorting through these questions can make the natural grieving process of losing a loved one even more challenging than usual. A need for answers is common. Amongst the questions you have, you may be worried about your own health and the chance of this happening again in your family. The inherited heart diseases we discuss on this website can cause someone with few or no other previous symptoms to die suddenly. Finding the correct answers about why it happened may offer some comfort. Finding the correct answers may also lead to medical screening and treatment options for you and your family members for the heart condition. All of this may prevent a sudden death from happening again.

When Should I Suspect an Inherited Heart Disease in My Family?

Some inherited heart diseases can cause a person who otherwise seems healthy to suddenly die. The following situations make an inherited heart disease more likely. Talk to your medical examiner, genetic counselor, or other healthcare provider about these – everybody’s situation is unique and it is important to get information about yours specifically.

  • The sudden death occurs in a young person who seems healthy, and no physical cause of the death can be found
  • The events of the sudden death are unusual; for example, an experienced swimmer drowning or a one-person car accident in the middle of a sunny day
  • The person has a history of fainting or seizures

What Can I Do to Learn More about the Sudden Death in My Family?

Although the time immediately following the death of your loved one is a difficult one, there are things you can do to begin the search for answers. Here are some important first steps as you explore whether the death of your family member could have been caused by an inherited heart disease:

  • Collect information about your family’s health history. Our family history questionnaire can be helpful to create a picture of your family’s history (pedigree) that you can share with the medical examiner and your own healthcare providers. Contact the medical examiner as soon as possible and ask him/her to collect and store proper tissue and blood samples, if they haven’t already.
  • If an autopsy was done, talk with the medical examiner about any findings.
    • Some inherited heart diseases can be diagnosed by an autopsy. Genetic testing may be helpful in these cases. These include hypertrophic cardiomyopathy (HCM), dilated cardiomyopathy (DCM), and aneurysms. If your loved one is found to have died from one of these conditions, you should meet with a genetic counselor or other healthcare provider to talk about genetic testing and the implications for other family members.
    • Other inherited heart diseases may have “normal” or “unclear” autopsy findings, like “mild myocarditis” or a “slight cardiomyopathy.” If your family member’s autopsy is normal or unclear, talk with the medical examiner, a genetic counselor or other healthcare providers about possible genetic testing.
    • You can also discuss the specifics of organizing genetic testing below with a medical examiner, genetic counselor, or other healthcare provider:

Collecting Tissue and Blood Samples for Genetic Testing:

  • Collect at least 5-10mL of whole blood in each of two EDTA (purple top) tubes and store at room temperature (15-30°C) for a few days, or refrigerate (2-8°C) for longer storage.
  • If tissue is saved, heart tissue is usually preferred. This should be frozen at -80°C immediately after collection and not fixed or embedded in any way.
  • Laboratories may also accept other blood and tissue samples, but the ability to do genetic testing on these samples will vary.
  • Your healthcare provider can contact the genetic testing laboratory with any additional questions about sample storage or genetic testing.
  • Find out how long the medical examiner is able to store the tissue and blood samples. You make want to look into DNA banking options to take advantage of later research findings. For more information contact Lynn Johnson, Director of Family Support, at Lynn@sads.org or 800-STOP-SAD.
  • If a diagnosis is not found by autopsy or genetic testing, all close family members (parents, brothers, sisters, children (if applicable)) of your loved one should have medical screening for inherited heard diseases by a specialist (electrophysiologist or cardiologist). This should include at least a 12-lead electrocardiogram (EKG) and an exercise stress test. Seeing a doctor that is familiar with inherited heart diseases is important.
Chart shows the dominant inheritance in people pedigree

Who Else Is Available to Help?

The Sudden Arrhythmia Death Syndromes (SADS) Foundation can help you with all the steps of your journey in this process. For example, they can also give you contact information for a knowledgeable doctor near you, grief resources, and connect you to other families that have been in a similar situation. SADS can provide you with sample letters and suggestions for how to deal with some insurance issues (in the U.S.) as you consider genetic testing. Through SADS, you can also create a beautiful memorial page in memory of your loved one, which can be used to create a memorial fund. Visit their website for this and other valuable resources.