My Daughter Died Mysteriously and Suddenly. It’s Hard to Watch Scientists Search for an Answer.
Reading Time: 4 minutesMy 2-Year-Old Died Mysteriously. It’s Hard to Watch Scientists Search for an Answer., A recent breakthrough in understanding sudden unexplained death in childhood is much needed. But it can also send parents like me spiraling., Sudden unexplained death in
On a hot August afternoon, I finished a call with a client as I opened the door to the room of my 2-year-old daughter, Alice. She’d slept a little longer than usual, and I needed to wake her so we could retrieve my 4-year-old daughter, Grace, from school.
I leaned over Alice in her crib, and she was stiff and blue. Bad, bad, very bad ran through my brain. I started CPR, counting two breaths per 30 chest thrusts, and somehow managed to call 911. Eventually, the paramedics arrived. They told me to stand back. I did.
Shortly after, I heard some version of ‘She’s gone. I’m so sorry.’
I collapsed and realized I was under Alice’s birthday banner, which I had lovingly hung 11 days prior. ‘She can’t be dead! She just had her birthday! She was fine! What the hell just happened?’ I screamed.
I didn’t get an answer to that question. An autopsy, and testing, turned up nothing. Her death was classified as sudden unexplained death in childhood, which means that a cause of death simply cannot be determined. It’s a rare outcome that mystifies scientists—just 400 children a year are classified with SUDC after they die, though it is the fifth leading classification of death in toddlers. And rare means nothing when your child is one of the statistics.
There was no one and nothing else to blame, so I blamed myself. I had been responsible for Alice’s care and safety. Still, I could not save her from the unpredictable and unknowable. Self-flagellation and intense guilt consumed me.
Even after we received the SUDC classification, I kept wondering. Maybe we had a gas leak? (We didn’t.) Maybe the Tylenol I’d given her for teething pain and a 99-degree temperature was tainted? (It wasn’t.) Maybe she suffocated? (She didn’t.) There were so many maybes and so little psychological bandwidth.
Everyone I knew told me not to feel guilty, which is as effective as telling someone who is having a panic attack that they should calm down. I didn’t believe them. But also, I didn’t want them to stop telling me, to stop trying to pull me out of my spiraling, because the guilt felt powerful enough to annihilate me. My daughter Grace still needed a mother, so every day, I went on with life, silently chanting, ‘Do this for Grace … and the memory of Alice.’ To keep a grip on my will to live, I vowed to do something healing for at least one hour a day, whether taking a bath, hiking, writing, doing charitable work related to our loss, or exercising. But still, I was circling the drain.
A military friend politely pointed out that I had all the hallmarks of PTSD, a suggestion I initially pooh-poohed. Then I started going down the checklist: I was hypervigilant; I couldn’t stop reliving the events; I had debilitating anxiety; I had trouble breathing and talking; I experienced intense guilt; I couldn’t sleep or focus.
I realized my friend was correct. Fortunately, Los Angeles is home to the sliding-scale Southern California Counseling Center. Fortunately, they offer eye movement desensitization and reprocessing and other trauma and resiliency therapies. Thankfully, I was provided with an extraordinarily talented therapist after they confirmed a PTSD diagnosis.
One of the many things I learned in therapy is that there is healthy and unhealthy guilt. Healthy guilt occurs when we hurt ourselves or others and is proportional to the damage inflicted. Unhealthy guilt occurs when we are not to blame, cannot control the situation, or are experiencing guilt disproportional to the damage. It is generally irrational or misplaced. Unhealthy guilt can be an unconscious attempt to control the uncontrollable. Once I discovered that, I was able to address the irrational concept that I could have protected Alice from something a team of scientists could not identify.
The guilt might have been unhealthy, but I also was able to feel kindness toward myself for feeling it: As parents, we feel guilty if kids skin their knees, don’t share with friends, don’t eat their vegetables, or act out in public. If you found your child dead in their crib, I don’t know who wouldn’t feel guilty.
After I had had several therapy sessions and practiced a lot of self-care, the guilt, panic attacks, and intrusive images around Alice’s death lessened. It’s been over a decade since that terrible day. But healing isn’t linear. On Jan. 5, NYU Langone released a new study identifying a potential cause for at least some of these tragic SUDC deaths. SUDC research is challenging due to small sample sizes and lack of funding. This recent study, itself small, is the first breakthrough in decades, and suggests that febrile seizures could be at play in some cases.
This development is a step toward scientists understanding these deaths, and I hope it will spark additional research. But hearing about it and seeing it covered also opens wounds. New medical findings like this can open a portal of guilt. One may find themselves adrift in the sea of second-guessing: What if I had been in the room at the right time to intervene? What if I had gotten my child the right test? Like many other SUDC parents, I am deeply grateful we are learning things that may help prevent future deaths. But potential answers bring relief and misery in equal measure.
Knowing I remain at risk for PTSD reactivation means I must double down on my self-care. ‘What ifs,’ overwhelm, and sleep deprivation are the most predictable activators of PTSD symptoms for me; they let me know I must care for myself gently. I must prioritize my peace. I must be vigilant about protecting myself from becoming overwhelmed. Sleep must be sacred. I must replace every ‘What should I have done?’ with ‘What can I do to help now?’ Doing the aforementioned drastically reduces the anxiety with which I still struggle because it provides purpose.
What can I do to help now? I can inform people there are potential causes for some of these unexplained deaths but that more research is desperately needed. (After all, most children who experience febrile seizures are fine.) I can assure people that there are tools to escape the abyss of grief, trauma, and guilt. I can validate that an unhealthy survivor’s guilt is understandable yet debilitating and treatable. I can treat myself gently so I can live fully. I can continue to help others in Alice’s memory, while enjoying every moment with my daughter who is still here.
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