For families navigating life after a diagnosis of Hypoxic Ischemic Encephalopathy (HIE), seizure management often becomes a central focus. Epilepsy is a common outcome of HIE, and while many children respond well to treatment, seizures remain a serious medical concern—especially when poorly controlled. One of the most devastating risks associated with all epilepsies is Sudden Unexpected Death in Epilepsy, or SUDEP.
Every neurologist should assess the risk, communicate, and educate about SUDEP -- at the beginning of an epilepsy diagnosis no matter when that may be, or how "easy" to control the type of seizures are.
It's an uncomfortable topic to discuss, but critically important to do so.
What is SUDEP?
SUDEP stands for Sudden Unexpected Death in Epilepsy. It refers to the sudden, unexplained death of a person with epilepsy, typically during or following a seizure, often at night or during sleep. No other cause of death can be found after thorough investigation.
According to the Epilepsy Foundation, SUDEP affects about 1 in 1,000 adults with epilepsy per year, and the risk is higher in individuals with frequent, uncontrolled tonic-clonic (formerly known as grand mal) seizures.
Why Is This Relevant to HIE?
Seizures are common in both the newborn period and beyond for children with HIE. Some develop epilepsy as a result of the HIE brain injury. This puts them into a category of children who may be at increased risk for SUDEP—especially if seizures are not well controlled, or children with seizures are unmedicated.
While SUDEP is rare in children compared to adults, it does occur in pediatric populations, particularly among those with frequent generalized tonic-clonic seizures, nocturnal seizures, and developmental disabilities—all potential outcomes of HIE.
Key Risk Factors for SUDEP Include:
What Can Families Do to Lower SUDEP Risk?
The Danger of "Natural" or Naturopathic Alternatives
Nobody wants their children on medications, but medications are necessary for many children and adults living with HIE to allow their brains to rest, heal, grow and thrive.
In the search for “safer” or “more natural” treatments, some families are targeted by naturopaths, alternative medicine providers, chiropractors, or online influencers demonizing medications, without evidence or data, and promising seizure cures through unproven, unregulated supplements, detoxes, or downplaying the risk of going unmedicated. It’s understandable to want to try everything possible to help a child, but it's important to understand the full risks when abandoning evidence-based treatment—especially antiseizure medications.
Did you know? Naturopaths and chiropractors cannot prescribe or monitor medications, and some are not even licensed healthcare providers. Supplements they promote may interact dangerously with prescribed medications, and many have no evidence of effectiveness.
Trusted Resources for Families
If you’ve experienced SUDEP in your family, you are not alone.
Reach out to Hope for HIE’s bereavement program or the Danny Did Foundation for support, community, and resources.
Let’s continue building awareness and advocating for better safety, research, and outcomes—for every child with HIE and epilepsy.
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