March is SUDC Awareness Month

March is SUDC awareness month in many states within the US. I’m hoping to convince Florida legislators to join other states in promoting awareness of this rare and little known tragedy. What is SUDC ?

SUDC stands for Sudden Unexplained Death in Childhood. SIDS on the other hand is Sudden Infant Death Syndrome in children 0 to 12 months of age. SUDC pertains to children 1 to 19 years of age whose cause of death remains unexplained even after thorough case investigations including; examination of the death scene and the child’s and family’s medical history. SUDC is a diagnosis of exclusion. A diagnosis made when other causes of death are not identified. Sudden unexpected death of any cause is exceedingly rare, its incidence is 1.5 deaths among 100,000 toddlers.

I was made aware of SUDC after my grandson, Jackson, was found unresponsive in his crib at 2 years, 1 month and 20 days old. He had been visiting us in Jacksonville just two weeks prior and was happy, healthy and very vibrant. When our daughter, Brooke, called us with the news, my husband, Ron, and I were shocked and devastated. We immediately flew out to San Francisco where Brooke and her husband lived. We stayed there with them for a month to attend Jackson’s funeral, take care of his heart broken parents and help them get their home ready for sale as it was too traumatic for them to stay on there.

Thankfully there is the amazing SUDC Foundation that was established in 2001 by two mothers, Laura Crandall and Lorri Caffrey who had also been impacted by SUDC. I contacted them about Jackson’s passing. They were so kind, sympathetic and helpful. I was sent a Family Resource Guide which introduced their many services for SUDC families which were provided at no cost. They connected me with another grandmother who had lost a grandson. That was in 2012 and we still stay in touch. I was sent a series of bereavement emails to help with the grieving. I always receive a card from them on Jackson’s birthday and his angel day. They serve over 500 families in 14 countries with bereavement support.

SUDC Foundation not only helps families heal after the tragic loss of a beloved child, they fund the SUDC Research Project. Research is needed to better understand the causes of SUDC and to uncover new diseases that present as sudden death in childhood without an anatomic trace at autopsy. Hopefully someday, researchers will find trends that will help doctors and parents recognize signs that a child is at risk of SUDC.

After six years of tireless SUDC advocacy, President Obama signed into law the Sudden Unexpected Death Data Enhancement and Awareness Act on December 18, 2014. This Act works with the Center for Disease Control and Prevention to improve the quality and consistency of data collected during death investigations, to better inform prevention and intervention efforts. This enables doctors and researchers to better track, research and prevent these tragic losses.

Inspired by an SUDC Foundation parent, the SUDC Banner Project was designed to raise much needed awareness of sudden unexplained death in childhood. Each of the three, 12' x 4' foot banners, featuring the many faces of SUDC, began their travel around the world in late January 2017. They are displayed in homes, hospitals, businesses, and other heavily trafficked areas by the volunteer hosts. I volunteered to host a banner. The banner will have a picture of Jackson along with other children who were victims of SUDC. I’m expecting it to be delivered to me any day now.

 April 7, would have been Jackson’s 7th birthday; to commemorate, our family always go to Chicago where Jackson was born. We release balloons with love messages for him and eat birthday cake. We wonder what he would have looked like at each birthday and what his life would have been like. May 27, will be Jackson’s angel day. It is always a very hard day for all of us. Ron and I light a candle in his memory each year. His little light will always shine in our hearts as he would never be forgotten.