My daughter has CPVT.
My daughter, Lily, suffered sudden cardiac arrest while swimming in our pool on July 8, 2012. She went without oxygen for an estimated 11 minutes. Lily continues her recovery from the resulting anoxic brain injury. She is now 16 years old.
Here is her story.
On July 8, 2012, many lives were forever changed. It was a typical summer Sunday. My girls were recently out of school (Lily finished 3rd grade and little sister Charlotte finished 1st grade) and summer was just getting started. Golf camps, surf camps, Vacation Bible School and an annual camping trip to Big Sur were approaching. Not to mention relaxing days at the beach and in our backyard pool with family and friends. Life was good.
My sister and her family came over for a belated birthday celebration for my brother-in-law. It was to be a day of splashing in the pool and grilling pizzas on the barbecue. It started off like any typical pool gathering. Lily and her older cousin were perfecting their jack-knife technique while jumping off the top of the pool waterfall. (Something she has done a thousand times). All eight of us were in and around the pool at the time of Lily’s last jump. Auntie had her underwater case on her iPhone and caught everything on video, including the event.
Lily was showing us her spectacular jack knife dives, she’s lands on her back with arms holding on to her right knee, feet above the water. Lily was especially wired that day, with tremendous enthusiasm, taking her dives very seriously.
The next jump she landed on her back again, you can here my sister (on the video) asking if she’s OK, it looked like it would have hurt. Her head popped up out of the water and she smiled and said she was OK as she swam towards the edge of the pool. Just a few strokes short of the edge, she froze and as she fell backward sinking into the pool. Something was wrong. We asked her cousin standing above her at the edge was she OK? He shrugged. Within seconds Jim flew in and pulled her out of the pool. I ran to them and after what I saw and the sounds coming from Lil. My first thought was that she was having a seizure. I remember my brother-in-law yelling “CALL 9-1-1!, CALL 9-1-1!”
Lily’s uncle performed CPR but intermittently had to stop at the 9-1-1 operators request because she appeared to be intermittently breathing but she was motionless as her face began to turn blue. She seemed to take some breaths but we could barely find a pulse. Time stood still. It just didn’t seem real, it was all happening so fast.
By the time the paramedics arrived, several minutes had passed. We knew the paramedics; Lily would always get her gold fireman stickers from the same guys as they shopped the local grocery store. Here they were now saving her life. After what appeared to be violent CPR, and double defibrillation shocks, Lily had a weakened pulse of 32.
Lily was rushed to the local hospital. There doctors frantically worked to keep her stable and get a CT scan. While Lily went for her CT scan Jim and I poked our heads in the waiting room to acknowledge Jim’s parents—that’s when we heard those two words I’ll never forget, “Code Blue, CAT Scan.” Lily had gone into cardiac arrest for the second time. A security guard found us and escorted us to be with her. I called out her name, asking her not to leave us. Seconds later, her heart rhythm was restored. Quick scan revealed she did not suffer any blunt force trauma that we may not have witnessed when she entered the water. She was immediately taken up the road to the local children’s hospital where she would be in the best hands for acute critical care. The plan, pray she makes it through the night and stable enough for one more transport further up the road to the major children’s hospital, at the crack of dawn to avoid commuter traffic. She made the trip and was admitted to PICU where she remained in that room for an entire month.
After several heart studies, ICD surgery, MRI’s, countless EKGs and X-rays Lily moved to less critical care. But she returned to PICU for another 2 weeks after she experienced another cardiac arrest. We also learned the cause of her injury, she was diagnosed with CPVT. But after myself, my husband and other daughter we learned it was not hereditary but most likely a genetic mutation.
Now we were on borrowed time to find Lily’s next home away from home (the hospital and insurance was pushing us out to take Lily home). She moved to another children’s hospital where she was accepted into the rehab program. We remained there for 11 weeks. Unfortunately, Lily spent several of those weeks in and out of the PICU for a variety of issues. This time we knew we were not going to win the fight so we decided to make arrangements to bring her home. Lily had lost all mobility, major and fine motor skills, swallowing, eating, vision tracking — the doctors had no hope of her recovering. But when we looked into her eyes we knew she was there and we weren’t ever going to give up on her.
Since Lily’s been home she has continued to improve and progress. Her vision returned with normal tracking, she regained head control and trunk control, swallowing allowing her to enjoy pureed foods, movement of her limbs and enough on her right side to give you a slow high-five. She continues to amaze us all with her spirit and her physical progress. I can only speak for myself but life has changed in so many ways. I’ve lost and gained. I’ve learned so much. I learned about the human body from doctors, nurses, therapists and specialists yet I’ve learned so much about human nature from strangers, family and friends. I’ve learned that it’s hard for some to deal with life altering events and extreme sadness. I understand but sometimes I also wonder why when we are the ones in the trenches. But I’m learning and I’m trying to be more understanding. How I see life with a new perspective. Not just experiencing such heartbreak but seeing the world from her eyes. Many people (especially children) don’t know how to talk to her because she’s in a wheelchair or think that she’s not mentally there because she isn’t talking back. I’ve had to learn the “system” and fight for services and education. How isolating our world has become and every day I search for something to break the monotony. How I feel solely responsible for her happiness. How hard Lily works and how she desperately strives to get better by doing hours and hours of therapy. How I’ve had become two different mothers; one for Lily and one for Charlotte. How it has challenged my husband and I. How sometimes I feel I can’t relate to anyone and the outside world most of the time. How lucky and thankful I am to be Lily’s Mom but at the same time this means that I hurt deeper than anyone.
But like my aunt always told me the pendulum swings both ways. There are those who have brought so much love and support to our family that I cannot find the words to express my gratitude. The posts and notes and prayers from all over the globe mean everything. We are so blessed with unbelievable family, friends, classmates and fellow parishioners who have been there for us through the years. Lily has shown and taught me so much. She is my inspiration. She has been knocked down time and time again but she keeps getting back up and fights on. She has endured countless complications from being immobile. She has had a full spinal fusion, hip dislocation and hip surgeries, relentless spasticity issues, etc. But she’s shown me the goodness in people. I’m learning to let go and stop trying to control outcomes.. The practice of patience, everything happens in time. To live in the present; not the past or future. All we have is today, here and now. And I’m forever grateful that at this moment Lily is sitting next to me, laughing, smiling, and breathing.
Lily’s CPVT is managed with an implanted defibrillator and is on a couple different heart medications and I’m happy to say she hasn’t had a heart event in nearly 7 years. She now attends a special ed program in a local high school, she’s able to attend 4 hours a day, 4 days a week. Before starting this last year all her instruction was at home. She uses an eye-tracking computer for communication. Lily has a very full life. We take her to the mountains for adaptive skiing, lots of beach time and walks along the beach, movies, boating and fishing, and just being outdoors. Lily is our miracle.
Lily’s journey can be found here: https://www.lilyneedham.com/