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Patients and families

Sudden Unexpected Death and Sudden Cardiac Arrest

What to do when a loved one dies suddenly and unexpectedly

A sudden unexpected death (SUD) in a seemingly healthy child or young adult can be the result of a sudden cardiac arrest (SCA). A SCA occurs when the heart stops beating abruptly without warning. SCA is caused by a failure in the electrical system of the heart.

Failures or irregularities in the heart’s rhythm (usually in older adults) can be caused by cardiovascular disease such as high blood pressure, diabetes, artery disease or a defect in the heart muscle or structure. When someone dies suddenly without warning and there are no physical signs for the cause of death, an inherited heart rhythm condition (IHRC) is suspected. IHRCs are genetic conditions that cause abnormal heart beats that in some cases cause life threatening cardiac events or death. Most often there are no warning signs of these conditions, but sometimes there may be clues if you know what to look for such as loss of consciousness or dizziness with exertion, swimming, excitement, or emotional events. A family history can also be helpful in diagnosing an IHRC. Questions to ask and think about are the stories of a healthy family member drowning even though they were a good swimmer, single motor vehicle accidents unrelated to impairment, or miscarriages and still births. Does your family have stories of other young family members dying unexpectedly?

Talking to the medical examiner or coroner in the cases of sudden unexpected death

Sudden unexpected death is tragic for the family and those close to the deceased. The medical examiner/coroner will perform an autopsy. Not all medical examiners/coroners are aware of inherited heart rhythm conditions and may not know that saving a sample of the deceased’s blood or tissue can help to answer the genetic causes of SCA. Speak with the medical examiner/coroner about your concerns and suspicions. Request that a blood sample or tissue be stored for future genetic tests.

This is a difficult road to navigate. Speaking with someone from an Inherited Heart Rhythm Clinic or the Hearts in Rhythm Organization (HiRO) can help. Questioning what happened, and a need for answers is normal. IHR clinics and the HiRO are experts who study inherited heart rhythm conditions, causes of sudden cardiac death, and do their best to help find answers for the SUD, examine family members, provide treatment and prevent further tragedy. Sudden unexpected death due to IHRCs can be prevented with lifestyle and medical interventions.

When a family member or loved one dies unexpectedly, many emotions, questions, and thoughts will undoubtedly arise. In cases of unexpected death, it can take months for autopsy results. The results of the autopsy may fail to provide the cause for the death. In these cases, the grieving process for those affected may be more difficult. With unanswered questions in regards to the loss of a loved one, feeling doubt, guilt, anger and other strong emotions can be harder to come to terms with, but there are people that can help. See the link below for access to support.

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