Name: Lila Wolfram
Age: 4
When was your SCA? October 2015 (8 months old)
Which SADS condition do you have? Idiopathic Ventricular Tachycardia
How are you treated? Lila has a Medtronic Evera ICD. She had a left side sympathetic denervation (LCSD) performed at 10 months old. She currently takes Amiodarone and Nadolol.
Can you tell us about your Sudden Cardiac Arrest (SCA)?
Lila was 8 months old when she had a SCA at home. My husband (Jim) and I woke up to hear her crying in her crib. When we got to her she was having trouble breathing and was grayish. After another minute or two, she went limp and stopped breathing. We called 911 and Jim started doing CPR. EMTs and State Police arrived. She was shocked 2 times with an AED, and another time on the way to the hospital. Her heart rate was over 330 bpm by the time she was at the hospital and hooked up to a monitor. She was transferred to the Children’s Hospital of Philadelphia (CHOP) and had an ICD implanted the following week.
About 6 weeks after her ICD was implanted Lila had a “VT storm” with many, many shocks from her device. After this she had the LCSD performed at the Mayo Clinic . All her genetic tests have been negative to date.
Did you have any warning signs of having a SADS condition before your SCA?
Not a single warning sign!!! No family history either.
What has been the biggest challenge you’ve faced as a SCA survivor and/or living with your diagnosis?
The biggest challenge that I have faced as Lila’s parent is learning to trust her device to do its job and to learn to live with the uncertainty that comes with being the caregiver to a young child with a condition. She was so young she could not tell me how she was feeling. Living with the constant worry of her being shocked.
What is one positive thing that has come out of your SCA/diagnosis? I have met some absolutely amazing people during this “journey” (I hate calling it that) with Lila. I have also learned how to advocate better for Lila, my other kids, and myself. Last month I was invited to speak at a quarterly meeting at Medtronic about Lila – something I never thought I would be able to do. This all has given me a little more confidence in myself as a parent.
What encouragement or advice would you give someone who has just survived a SCA or been diagnosed with your condition?
Join a support group and try to find people to connect with that understand what it is you are dealing with. It doesn’t have to be someone with the exact same condition. In my case, I learned so much from adult patients with devices – as well as gained support from other moms of young children with devices. Both equally valuable! And so important to not feel alone.
What does your day-to-day life look like?
Lila is in her second year of preschool right now, and LOVES it! She is living her life as basically a normal kid! And I’m so proud that her and I both have gotten to the point where this is possible!
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