At just eight months old, Lila survived sudden cardiac arrest with no warning — and ten years later, she’s thriving, reminding families that connection and community can make all the difference.
By Jen W. and the SADS Foundation
Updated February 23, 2026 | 4 minute read
When Lila was eight months old, there were no warning signs. No unusual symptoms. No family history of heart rhythm conditions. She was a healthy baby, sleeping in her crib at home in October 2015, when everything changed.
Her parents, Jim and Jen, woke in the night to hear her crying. When they reached her crib, Lila was struggling to breathe and looked gray. Within minutes, she went limp.
They called 911. Jim began CPR.
Emergency responders arrived quickly. Lila was shocked twice with an AED at home and again on the way to the hospital. By the time she was connected to a monitor, her heart rate had soared above 330 beats per minute. She was transferred to the Children’s Hospital of Philadelphia (CHOP), where physicians eventually diagnosed her with idiopathic ventricular fibrillation (IVF) – a diagnosis made when no underlying cause can be found for a cardiac arrest – and implanted a heart device to help keep her safe (called an ICD) the following week.
A Storm at Ten Months
For a brief period, life returned to normal. But about six weeks after her ICD was implanted, Lila experienced a ventricular tachycardia “storm” – a cascade of dangerous heart rhythms (arrhythmias) that triggered repeated shocks from her device. The episode drained her ICD battery and required another surgery to replace it.
Soon after, her family traveled to the Mayo Clinic, where Lila underwent a left cardiac sympathetic denervation (LCSD), a surgical procedure sometimes used to reduce life-threatening arrhythmias when medications and devices are not enough. Her medical team also adjusted her medication dosages.
Even then, the road was not smooth. On her first birthday, Lila received two more shocks. She was admitted to CHOP for nearly two months of inpatient observation and further medicine adjustments
Ten Years of Stability
It has now been ten years since Lila’s last ICD shock. She recently turned eleven. Lila is a thriving fifth grader. She loves art and participates in the school’s art club. She’s a Girl Scout. She loves being outside and playing with her friends.
Last June, she underwent another planned device replacement as her battery neared depletion. It is now her third ICD, and over time, her physicians have been able to carefully wean her off one of her medications.
Despite extensive evaluation, including multiple rounds of whole exome sequencing at CHOP, no genetic cause has yet been identified.
The medical crises were terrifying. But the long-term emotional adjustment brought its own challenges.
“The biggest challenge,” says Jen, “was learning to trust the device to do its job – and learning to live with the uncertainty.”
Lila was so young at the time of her arrest that she could not describe symptoms or sensations. Her parents carried the constant worry of whether she might receive a shock. Over time, they’ve found their new normal – with the help of others in the community and their medical team.
“Find Someone Who Understands”
In the earliest days after Lila’s diagnosis, a device nurse at CHOP suggested that Jen connect with the SADS Foundation. Through that introduction, she met another mom whose child’s story closely mirrored Lila’s.
“It was amazing to have a conversation with someone who understood what our family was going through,” Jen says.
She joined Facebook support groups and reached out to others who had been walking this road longer — including adults living (and thriving!) with ICDs and similar diagnoses. Even across different ages and conditions, the shared experiences and hope they provided were remarkable.
“You don’t have to find someone with the exact same diagnosis,” she says. “Just someone who understands.”
The community helped answer questions Lila herself was too young to articulate. It offered reassurance, practical advice, and perhaps most importantly, the reminder that they were not alone.
For families newly facing a diagnosis or sudden cardiac arrest, Jen’s message is clear: find connection.
Join a support group. Reach out. Look for people who are thriving – especially those who have been living with devices or arrhythmia conditions for years. Their lived experience can offer perspective that clinical explanations alone cannot.
“It’s so important not to feel alone,” she says.
Need help now? Connect with our Family Support Team for referrals, resources, and community.
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