Poppy’s Legacy: Raising Awareness of SADS and Inherited Cardiac Conditions

In 2024, my beautiful daughter Poppy passed away suddenly due to undiagnosed Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT), a rare but life-threatening heart condition. Poppy was young, healthy, and full of life, her sudden loss left a profound hole in our family and a lasting reminder of how silent and devastating Sudden Arrhythmic Death Syndrome (SADS) can be.

In her memory, I founded Poppy’s Light Foundation (PLF), dedicating my life to raising awareness of SADS and inherited cardiac conditions (ICCs), helping families access screening, treatment, and emotional support, and supporting Poppy’s surviving siblings. I left my role as a specialist nurse to focus fully on this mission.

Through PLF, I am campaigning with Health Minister Wes Streeting to add inherited cardiac conditions to the newborn screening programme, a crucial step that could make SADS a thing of the past.

What is SADS?

Sudden Arrhythmic Death Syndrome (SADS) refers to sudden, unexpected death caused by an abnormal heartbeat, often in a heart that appears structurally normal. Unlike a heart attack, which is usually due to blocked arteries, SADS is caused by electrical disturbances in the heart.

SADS most commonly affects young people aged 15–40 and can strike without warning, sometimes during sleep, rest, or even mild physical activity. It is often caused by inherited cardiac conditions (ICCs), genetic disorders that disrupt the heart’s rhythm.

Many people with ICCs remain symptom-free for years, only discovering their risk after a life-threatening arrhythmia occurs. Early detection and awareness are therefore vital.

What are Inherited Cardiac Conditions (ICCs)?

Inherited cardiac conditions (ICCs) are genetic disorders that can predispose someone to dangerous arrhythmias and SADS. Some of the most common include:

• Long QT Syndrome (LQTS): A delayed heart “reset” that can trigger fatal rhythms.

• Brugada Syndrome: Causes irregular heartbeats, often during rest or sleep.

• Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT): Triggered by exercise or stress, this was the condition that affected Poppy.

• Inherited Cardiomyopathies: Structural disorders such as hypertrophic cardiomyopathy.

Families with a history of sudden unexplained death should consider screening and genetic testing, as early detection can save lives.

How to Identify SADS

Identifying SADS before tragedy strikes is challenging because many individuals show no symptoms. However, there are warning signs to watch for:

Warning Signs:

• Fainting (syncope), particularly during exercise or emotional stress

• Palpitations or irregular heartbeat

• Seizure-like episodes

• Chest discomfort or pain

High-Risk Indicators:

• Family history of sudden unexplained death

• Diagnosis of an inherited cardiac condition

Screening and Diagnostics:

• Electrocardiogram (ECG): Detects abnormal heart rhythms

• Holter Monitoring: Continuous monitoring over 24–48 hours

• Genetic Testing: Identifies mutations linked to ICCs

• Family Screening: Essential where there is a history of sudden death

Even subtle symptoms should be investigated. At PLF, we help families access screening and connect with specialists to detect these silent risks early.

How to Prevent SADS

Although SADS cannot always be prevented, proactive steps can significantly reduce risk:

Medical Interventions:

• Implantable Cardioverter Defibrillator (ICD): Can prevent fatal arrhythmias

• Medications: Beta-blockers or anti-arrhythmic drugs to stabilise heart rhythm

• Regular Screening: ECGs, Holter monitoring, and genetic testing for those at high risk

Lifestyle Measures:

• Avoid stimulants such as caffeine, certain medications, or recreational drugs

• Maintain a heart-healthy lifestyle: balanced diet, moderate exercise, adequate sleep

• Manage stress through relaxation techniques, mindfulness, or counselling

Support and Awareness:

• Learn CPR and ensure access to Automated External Defibrillators (AEDs)

• Encourage schools, sports clubs, and workplaces to be prepared for cardiac emergencies

• At PLF, we provide psychological support, guidance, and peer networks for families living with SADS and ICCs

Prevention combines medical vigilance, lifestyle adjustments, and community awareness. Even small steps can be life-saving.

Living with SADS Risk

For families affected by ICCs, ongoing support is essential:

• Keep regular heart monitoring appointments

• Inform family and friends about potential emergencies

• Seek genetic counselling if planning a family

• Access psychological support for coping with anxiety and grief

Through Poppy’s Light Foundation, families receive both practical help and emotional support. No one should face this journey alone.

Honouring Poppy and Campaigning for Change

Poppy’s passing was devastating, but her legacy now shines through PLF. We are committed to:

• Raising awareness of SADS and ICCs

• Ensuring families have access to screening and treatment

• Providing emotional and psychological support

• Supporting Poppy’s surviving siblings and other families affected by sudden cardiac death

Through my campaign with Health Minister Wes Streeting, we are pushing to include inherited cardiac conditions in the newborn screening programme. Early detection from birth could prevent SADS entirely and save countless lives. Poppy’s story drives this mission, turning tragedy into action.

Conclusion

Sudden Arrhythmic Death Syndrome and inherited cardiac conditions are often invisible dangers, but with awareness, early detection, and community support, lives can be saved. Poppy’s story reminds us how fragile life can be, and how meaningful it is to act in her memory.

By supporting Poppy’s Light Foundation, families can access life-saving screening, treatment, and emotional support. Through awareness campaigns and advocacy for newborn screening, we can honour Poppy’s legacy and work towards a future where SADS is preventable.

Key Takeaways

• SADS is a sudden electrical malfunction in the heart, often affecting young people.

• Inherited cardiac conditions (ICCs) are a major cause of SADS.

• How to identify: Watch for fainting, palpitations, seizure-like episodes, and family history.

• How to prevent: Screening, medication, ICDs, lifestyle adjustments, and emergency preparedness.

• Support and advocacy: PLF provides access to screening, treatment, emotional support, and campaigns for newborn screening.

Poppy’s light continues to shine through the lives we protect, the families we support, and the policy changes we fight for.

References

1. Guy’s & St Thomas’ NHS Foundation Trust  “Inherited heart (cardiac) conditions referrals” (UK referral criteria for ICCs & SADS family history) Guy's and St Thomas' NHS Trust

2. SADS UK “Cardiac tests Sudden Arrhythmic Death Syndrome (SADS)” (explains tests, screening and familial implications) sads.org.uk

3. British Heart Foundation “Inherited heart conditions” (overview of genetics, symptoms, screening of ICCs) British Heart Foundation

4. Health Education England Genomics Knowledge Hub  “Sudden Arrhythmic Death Syndrome” (clinical features, genetics and management) Genomics Education Programme

5. Joint guidance document  “Joint Guidance for Coroners and Coroners’ Officers: Sudden Cardiac Death – Inherited Heart Conditions” (UK / coroner’s protocols around SADS and ICCs) Courts and Tribunals Judiciary