Why do seemingly healthy children suddenly die?
Out of every 100,000 U.S. kids, 1.3 die suddenly and without explanation. It's a relatively unheard of phenomenon called Sudden Unexplained Death in Childhood (SUDC). A Fort Riley mom wants to change that.
Spc. David Briscoe and his wife, Eden, knew when they married they wanted three children. They had their third - Christopher - in January 2014. Older brothers Tyler and Cameron were thrilled.
"He definitely completed our family," said Eden. "My older son was the best big brother. Cameron, my four-year-old, though it was the coolest thing in the world to be a big brother."
And Christopher appeared to love doing the things his brothers did. Eden said she thinks he wanted to be bigger than he was. "If my older two were wrestling, Christopher would be trying to wrestle, too, and he would jump in there."
On Easter weekend, 2015, Eden said she went to wake Christopher up to join everyone at the breakfast table, and found him lifeless in his crib. "My heart just sank," she recalled tearfully. "I flipped him over and he was discolored and I screamed at the top of my lungs. I called out for my husband. And I picked him up and I raced downstairs."
Tyler and Cameron stayed at the kitchen table while Eden and David called 911 and performed CPR until paramedics arrived.
"In hindsight he'd passed a long time, but at that moment I just thought, 'They're gonna save him. They're going to fix this. This is not real. This does not happen." They took Christopher to the hospital, leaving his stunned parents behind.
"We're not treated as his parents. He has now become evidence and they have to figure out why he passed away, which I'm 100% for," Eden said. What she didn't understand was why she wasn't allowed to hold Christopher when they arrived to the hospital and evidence had been taken. She says that's part of the reason she wants more people to understand that SUDC exists.
Two-and-a-half months after his death, Christopher's autopsy came back with cause of death "undetermined." After every physical test that could be done - and DNA tests pending - it's still not clear why or how he died.
Sudden Unexplained Death in Childhood is unpredictable and unpreventable. After Christopher's death, through a series of connections, Eden was put in touch with The SUDC Foundation.
Laura Crandall and Lorri Caffrey started a program in 2001, and co-founded the foundation in 2014. Both are SUDC parents.
"We fund crucial research and we provide advocacy and try to meet the needs of the community that this happens to from the family side, as well as supporting professionals trying to understand this," Crandall said. "Most of the general public doesn't know this occurs."
Confused with the more-commonly known SIDS - or Sudden Infant Death Syndrome - SUDC occurs in children over the age of 1, whereas SIDS occurs in infants under 1 year old, predominantly in the 2nd through 4th months.
Eden also wants more people to know about the amazing resource The SUDC Foundation has been for her and other families going through this. Through private funds, The SUDC Foundation is also working on research and advocacy and needs all the support it can get. The organization gets no public funding.
Eden has organized a fundraiser in Christopher's honor. Christopher's Pins for a Purpose will be held just days before the first anniversary of his death. Join the Briscoe family and others in raising support and awareness on April 2, 2016 from Noon to 3 p.m. at Little Apple Lane, 515 Richards Drive, Manhattan.
For more information about the fundraiser and Christopher's story, visit http://www.sudc.org/christopherscrusaders/pinsforapurpose
To learn more about The SUDC Foundation and the research being done by NYU Langone Medical Center, call 800-620-SUDC, or visit http://sudc.org/
The SUDC Foundation supports NYU Langone Medical Center's SUDC Registry and Research Collaborative as a way to help families and medical professionals take steps after an unexplained death to help with the research of SUDC.
A 2007 study links febrile seizures with SUDC. The SUDC Foundation describes FS as "commonly provoked seizures" that "typically appear as generalized tonic-clonic seizures between the ages of 6 months to 6 years associated with a fever." They can occur in previously healthy, developmentally normal children.
FS occur in 2-4% of children in the general population. In SUDC cases, 25-30% of children reported to the Foundation had a history of FS.
Three weeks before Christopher's death, he had a febrile seizure.
Eden credits No Stone Unturned and Katie's Way, in Manhattan, with helping her other two sons work through the pain of losing Christopher. Tyler and Cam have been visiting, individually, with professionals. Eden says it gives them a "safe place" they can communicate their feelings: things they may not be able or comfortable with talking to her and her husband about.
To learn more about No Stone Unturned, visit http://nostoneunturnedtlc.com/
To learn more about Katie's Way, visit http://katieswaymanhattan.com/