What is SUDC?
The mission of The Caleb Effect is two-fold. To spread Caleb’s love and to support the SUDC Foundation.
You may have seen our “Nice on the 9th” activities but you might not know about SUDC or the SUDC Foundation. A cause of death could not be determined for Caleb and is categorized as “SUDC.”
Sudden Unexplained Death in Childhood or SUDC is the sudden and unexpected death of a child 12 months and older which remains unexplained after a thorough case investigation is conducted. This must include; examination of the death scene, performance of a complete autopsy, and a review of the child and family's medical history.
-SUDC is not a diagnosis but a CATEGORY of death that currently eludes our scientific understanding.
-AT THIS TIME NO ONE KNOWS ANY WAYS TO REDUCE THE RISK OF SUDC.
-It is unpredictable and unpreventable.
-It also receives zero federal funding.
SUDC is NOT SIDS.
(SIDS is a category of death reserved only for babies under 12 months and receives federally funded research. Although there is no way to prevent SIDS, research has proven helpful in reducing some of the known risks.)
SUDC occurs in 1.4 deaths per 100,000 children, but it is suspected to be even higher than that due to inconsistent death investigation and reporting.
Based on 2016 statistics (the year we lost Caleb) provided by the CDC Wonder Database, those affected by sudden unexplained death, occurred in:
-236 children ages 1-4
-30 children ages 5-9
-37 children ages 10-14
-142 teens ages 15-19
What is the SUDC Foundation?
The SUDC Foundation is the only organization worldwide whose purpose is to promote awareness, advocate for research, and support those affected by SUDC. SUDC is the fifth leading category of death in children ages one to four, yet SUDC receives no public funding. The SUDC Foundation provides all services at no cost to families.
The Foundation is actively researching the "why" for families like us who have lost children from toddlers to teenagers without scientific explanation. They connect families worldwide who are living this nightmare with us and provide free support and advocacy. We are participants in their Sudden Unexplained Death in Childhood Registry and Research Collaborative (SUDCRRC) at NYU Langone Medical Center, and hope this vital research will someday provide answers.
For more information about SUDC or the SUDC Foundation, visit www.sudc.org.
How can I help?
As humans, we want answers. We have a very hard time knowing despite trying to do everything we could to protect Caleb, there is nothing anyone can tell us we could have done differently that would have changed the outcome. Families who lose a child whose death has been categorized as SUDC have to face that heartbreak every single day. We have already wracked our brains, lost many nights of sleep pondering what we could have missed, and asked a multitude of questions no parent should ever have to utter. Our state does not require autopsies to be performed in these situations once the caregivers have been cleared of wrongdoing (which is OBSURD and should be changed), but we hired a forensic pathologist to perform one anyway. If there were answers, we wanted them. A toxicology test was also performed, and police interrogators, detectives, physicians, scientists, specialists, and people with many prestigious titles next to their names have each been just as frustrated as the next.
We don't know why we only got to have Caleb here for two years, two months, and the early hours of his 23rd day. We understand Caleb's death eludes your comprehension as well. However, while we are confident that your curiosities regarding his untimely death are proposed with the best of intentions, suggestions and non-factual theories only add to our agony so we ask that they be kept to yourself. However, any peer reviewed, scientific articles can be forwarded to the SUDC Foundation at firstname.lastname@example.org.
Tell someone about SUDC! Share the information with your friends in the medical world, first responders, your neighbors, legislators, and anyone else who will listen. Put down your phone and have a real conversation with someone. Write someone a hand-written note. Follow the SUDC Foundation and The Caleb Effect on social media. Join us each month to be “Nice on the 9th,” and treat people the way Caleb did.