Sudden Arrhythmic Death Syndromes (SADS): Learning from Poppy and Changing Practice
- Victoria Eagle
- 7 days ago
- 3 min read
A Professional Reflection on Awareness, Missed Opportunities, and Prevention
Sudden Arrhythmic Death Syndromes (SADS) are inherited heart rhythm disorders that can cause sudden cardiac arrest in children and young people. These conditions are clinically challenging: structural heart abnormalities may be absent, symptoms may be intermittent or subtle, and early presentations often overlap with benign explanations.
Despite these challenges, the consequences of missed recognition are profound. In the UK, approximately 12 young people die each week from undiagnosed cardiac conditions. Many have had prior contact with healthcare services, highlighting opportunities for earlier intervention.
This reflection is not written to assign blame, but to ask a simple question for clinicians:
What can we learn, and what can we do differently?
Recognising the Clinical Red Flags
Inherited arrhythmia syndromes, such as CPVT, Long QT syndrome, and Brugada syndrome, may present with:
Syncope, particularly during or after exertion
Dizziness or light-headedness
Palpitations or chest discomfort
Transient vacant episodes
Non-specific anxiety or panic-like symptoms
These signs are often dismissed as anxiety, dehydration, or fatigue. While these explanations may sometimes be correct, they should never be assumed without careful assessment, particularly when exercise triggers the event.
A Missed Opportunity
Two years before Poppy died, she fainted at home after using an exercise bike. She appeared well, called out for me, and I took her to A&E. At the time, the episode was unexplained, and no referral to a paediatric electrophysiologist occurred.
I was an anxious mother in that department, trusting that reassurance equated to safety. Two years later, Poppy passed away suddenly from undiagnosed CPVT.
Her story is not unique. Many families affected by SADS describe earlier symptoms that were recognised but not escalated. It raises the question: how can clinicians spot risk when presentations are subtle, and parental concern is dismissed?
The Parents’ Perspective and the “Anxious Parent” Narrative
Parental concern, particularly maternal concern, is sometimes minimised in busy clinical settings. Anxiety, understandably, can be misinterpreted as the primary issue rather than a response to a potentially serious condition.
The lesson: listen, document, and pause. Anxiety should not replace risk assessment, and early reflection may save lives.
Family History: A Simple, Life-Saving Question
One practice change I would like to see embedded universally is the use of a single, vital question:
“Do you have a relative within three generations who has died suddenly due to a cardiac cause?”
This question is quick, evidence-informed, and potentially life-saving. Many families are unaware of the significance of sudden deaths decades prior. Clinicians are uniquely positioned to connect these dots.
Introducing POPPY Check
To support clinicians in recognising and acting on potential SADS presentations, Poppy’s Light Foundation has developed POPPY Check:
P – Presenting with syncope or collapse
Recognise unexplained fainting, particularly post-exertion, as a red flag.
O – Occurring during or after exertion
Exercise-related episodes require careful assessment.
P – Personal or family cardiac history
Ask: “Do you have a relative within three generations who has died suddenly due to a cardiac cause?” Family history often reveals inherited risk.
P – Potential inherited arrhythmia
Consider CPVT, Long QT, Brugada syndrome, and others. Normal ECGs or initial investigations do not rule out SADS.
Y – Yield to escalation, not reassurance
Unexplained symptoms should trigger referral to a paediatric electrophysiologist or specialist service. Document carefully and support families in navigating pathways.
“Stop. Think. Ask the POPPY Check questions. You may save a life.”
Clinical Practice Implications
Key actions for clinicians:
Recognise exercise-related syncope as a potential SADS red flag
Document episodes carefully, including context and triggers
Avoid premature reassurance when uncertainty exists
Refer to specialist electrophysiology services when indicated
Support families throughout the process
The Role of Poppy’s Light Foundation
PLF does not provide screening services. What we do offer is:
Close collaboration with specialist professionals
Education and awareness about SADS for families and clinicians
Promotion of access to screening and referral pathways
Support for families navigating risk and grief
Our role complements clinical services, ensuring that awareness and referral pathways are actively promoted.
Psychological Impact
SADS-related illness or bereavement has profound psychological consequences. PLF funds access to:
Clinical psychologists
Family therapists
Counsellors
Play workers
Supporting emotional well-being is as vital as physical assessment and referral.
Reflecting and Learning from Poppy
Poppy’s fainting episode two years before her death teaches us:
Early signs may be subtle
Parental concern should be taken seriously
Family history is crucial
Reassurance without escalation can miss life-threatening conditions
Embedding POPPY Check into clinical practice provides a structured, memorable prompt to act on these lessons.
Conclusion
SADS is rare, but preventable when warning signs are recognised, family history is explored, and specialist referral occurs.
Every clinician can make a difference. Every question can save a life.
Stop. Think. Ask the POPPY Check questions. Think Poppy.
Contact
Vicki Eagle
Founder, Poppy’s Light Foundation
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