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SUDC Insights

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SUDC Insights is the official blog of the SUDC Foundation which shares and discusses issues important to the understanding and the ultimate prevention of SUDC. If you have questions or issues you would like to see addressed in SUDC Insights, please let us know at sudcinsights@sudc.org.

1,000

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It’s a number I never thought possible. When my daughter Maria died during a nap, I was told the tragedy of her death was unique. After all, toddlers don’t just die without a reason found, right? Babies do. Young infants do. I was well versed in the tragic statistics of sudden infant death and the risk reduction measures advocated by the American Academy of Pediatrics. But walking, talking, high-energy and exuberantly happy toddlers? No, they don’t just die inexplicably.

That is what I was told back in 1997. By… everyone. It happened to my toddler and it seemed that I was the only person on earth who had experienced this atrocity.

But, a year and a half later, I learned this was not true. While attending a presentation at the national conference of the SIDS Alliance, I met a handful of others like me. All told the story of how their apparently healthy child - all who had already celebrated their brilliantly happy 1st birthday - had died suddenly without an explanation being found.

Some of us set off on a quest to raise funds to help create the first-ever research registry to study children like ours. In 2001, I worked with Dr. Henry Krous to create the registry based in San Diego. We started with the first definition of what we called Sudden Unexplained Death In Childhood (SUDC)-a category of death in children between the ages of 1 and 18 which remains unexplained after a thorough investigation, including an autopsy. In parallel, I joined forces with another parent affected by SUDC, Chelsea Hilbert, to create the SUDC Program. We now knew it was a possibility that we might find a few others like us.

But we never imagined how many there truly were. I welcomed every new family who registered with the program with a broken heart. I had the task of speaking to each of them over the phone to  gather information about their family to identify their most immediate needs and share how we might be able to help them. That first phone call would often be followed immediately by receiving an email from them filled with joyful pictures of their beloved child enjoying life. I imagined the sound of their giggles, the feel of their snuggles and the way they would lovingly eye their mom, dad, siblings and all those close to them. Our children were joyful and apparently healthy-until they suddenly were not. We are grateful to have not watched them endure a painful illness or injury before their deaths.

The stories of their child, shared so willingly with me, were a window into another family’s life and loss. How could he or she be gone? How could we not know why? The details about their child and their precious images were ingrained in me.

At first, the stories felt as different as the children they represented. After 100 or 200 of these phone calls, though, the aspects of their experiences started to form a rhythm. The similarities of their last days -  their last kiss goodnight coupled with a seemingly-trivial cold or fever and the long pause before they would call upon all their strength to share with me their darkest memories of their child’s death.

I felt myself starting to finish their sentences in my head as I listened to their words. The stories of our children had more similarities than not.

After performing hundreds of families’ interviews and reviewing data from the U.S. Centers for Disease Control and Prevention, I confirmed that my daughter’s death was indeed not unique. The data helped me feel validated, but not in any positive way. While each child represents a devastating loss for each family, each story was another piece of a much larger problem that few were paying attention to. Along with the seemingly unnoticed prevalence of these stories, several themes and unmet needs became apparent.

The first had to do with the data itself. While the children’s stories were similar, what happened after their deaths were not. Children who die suddenly and unexpectedly are investigated by a publicly mandated medico-legal death investigation system. It is varied throughout the U.S. and therefore the quality of each child’s death investigation, as well as the data it collected and the way it is classified, is varied as well. How could we know how widespread the problem truly was without uniform and consistent investigations?

The second need that became clear was for research. I have always struggled with the lack of public research to prioritize a better understanding of SUDC. In my head, I understand that research funding is scarce, and it is most responsible to invest funds where it can help the most people. But my heart feels differently. As a mother of a child who died a sudden, unexplained death, I want these deaths to be understood so we can prevent them in another child. And being a researcher, one who has intimate knowledge of the many stories of SUDC, makes it even more difficult.

And the third most prominent need I recognized was the necessity for community. Most families that I have interviewed have lost toddler-aged children, some adolescents and still others lost teenagers. Some lost one of a set of twins or triplets. Some were home when their child died, and some received an unexpected call at work. All were investigated by law enforcement, as indicated in such an occurrence, and some were interrogated with their home treated as a crime scene.  They all had their own struggles, coping styles and difficult journey to find their “new normal.” Some had a strong support system around them, and others had minimal support, which research tells us increases their risk of additional mental health challenges. Grief is singular to each individual but there are some challenges left in the wake of sudden, unexplained death that are common. These include anxiety about the health of surviving and future children, accepting the secondary losses of “what would have been,” and the struggle to find a happy and meaningful outlook on life after such a profound loss.

Their anxiety was well known to me and recognized more often in my phone interviews when the conversation felt overshadowed by the unasked questions that parents feared most to say out loud. “Will this happen again?” “Should I not have more children?” “How can I ever have more children? I could not survive if this happened again.” “Could I have prevented this?” “Will I ever be happy again?” Sometimes the pause is a little too long and I ask, “Are you wondering about (insert any of the above questions)?” I remember those days so well. Grief can feel paralyzing, even regarding knowledge when there seems to be only one answer that you can bear to hear. The power of peer support with one who has walked in similar shoes can be a unique source of hope. I am so grateful that while the services of the SUDC Foundation cannot take away the pain of loss that each family bears, it can provide a unique source of hope and relief from the isolation that one can feel after SUDC. My window into all of this allows me the honor to witness those most overcome with heavy grief, to later give back to those new in grief with the hard-earned wisdom and compassion that comes from losing a child.

Bobby Jenkins, Julia Burgess, Steve Myers, Laura Gould Crandall and Erin Bowen, SUDC Foundation Board of Directors members

By 2014, I had performed more than 600 family interviews across 16 countries. And I knew the needs of our community had outgrown our small but mighty little program. So, the SUDC Program transitioned to become an independent nonprofit organization, the SUDC Foundation. Its mission is to promote awareness, advocate for research and support those affected by sudden, unexpected or unexplained death in childhood. The new entity allowed us to focus on serving the recognized unmet needs and building a worldwide SUDC community to address them.

As a group, children of SUDC represent the 5th leading category of death in toddlers, ages 1-4 years old. Our most current data estimates that about 400 children between the ages of 1 and 18 die each year in the U.S. alone from a sudden, unexplained death. The families supported by the SUDC Foundation are a mix of newly-bereaved and those who are further removed from their loss. It is a safe place where parents, grandparents and other family members can share openly and honestly in a non-judgmental space. It is not uncommon for families to share with me that they credit this peer support community for “saving” them.

As our community continued to grow, we were also chipping away at filling the other recognized needs of SUDC. In 2017, we created the first five-year strategic plan for the SUDC Foundation, complete with 23 specific initiatives to address. To address the data challenges, we worked with and provided a scientific grant to the National Association of Medical Examiners and the American Academy of Pediatrics to create the first consensus guidelines (to be published January 2020 at sudpeds.com), which will address this need head on. To address research, I began working at New York University’s Langone Health with Dr. Orrin Devinsky in 2014 to create a multi-site collaborative to better understand SUDC. It has since built the world’s largest SUDC registry through scientific grants provided by the SUDC Foundation. I see daily how the courageous impact of families participating in SUDC medical research is inspiring to all the investigators involved and propels their drive to understand and prevent these tragedies.

At the beginning of 2019, I knew we had completed over 900 family interviews. It is difficult for me to admit that I can no longer easily remember the details of each family I have ever interviewed. But oftentimes, even a small detail brings the richness of their child and family story back to me in full view. “Oh yes, of course, that is Wesley’s dad.” Or in seeing a child’s picture, I recall learning how they adored dressing up as Snow White or am struck with how their joyful grin from ear to ear warms my heart. Perhaps it is a coping mechanism that the memories that first come to my mind now are the happy ones. That really was the essence of their lives, so it seems most appropriate to me.

2019 SUDC Foundation Family Retreat

In early October, I checked on how many family interviews I had completed. When I learned we were at 999, I stared at the email a long time. I reflected on all that had occurred for us to meet this pending milestone, one I was told was impossible to ever meet.

When I was told that Maria’s death was unique, I had some peace in that thought. It was painfully isolating but I was comforted somewhat by the idea that no one else knew the pain I was feeling.  

The reality of SUDC has since created a community, a movement for advocacy and a dedication of families and researchers to learn from our tragedies to help prevent it in others. It has also fostered support to help families navigate through grief and realize a joyful future despite their loss.

1,000 is hard for me to fully comprehend. I look at our banner that features the pictures of more than 200 children lost to unexplained deaths. I try to visualize five of them in a row and the enormity of the losses they represent.

We mark this milestone with mixed emotions. We know 1,000 is far too many to accept. But we are comforted to know so many have found us when they needed us and are honored to have the opportunity to serve them. By working together and supporting those affected by SUDC and those trying to better understand and prevent it, we honor those lost and all they taught us about love and life’s most precious gifts.

2019 SUDC Foundation Family Retreat

As difficult as 1,000 is, it is strikingly clear how the power of 1,000 stories have created positive change in the fight to eradicate SUDC. But it is even harder to admit that more cases of SUDC exist. Sadly, evidence and history suggest that there are many more of these milestones we have yet to meet.

The SUDC Foundation is launching an effort in honor of the 1,000 stories that have already touched our hearts and prepare for those we have yet to hear. We hope you will stay with us on our journey to achieve a future free of SUDC.

Wishing everyone peace, love and joy this holiday season and always.   



 


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