For me, deciding whether or not to learn about Sudden Infant Death Syndrome was not an option, it was a necessity. My daughter Jenelle died during a nap of SIDS on March 1, 1993 while in daycare. I had heard about SIDS but had no idea how a baby as healthy as mine could die so suddenly. It was learning about SIDS that relieved me of guilt and helped me to survive her loss. SIDS is a diagnosis of exclusion, meaning that when they can’t find a cause for a sudden death of an infant, it is labelled as SIDS (SUID, SUDI and undetermined are the same diagnosis as SIDS). Luckily, in our great state of California, it is mandated that SIDS parents receive a visit from a Public Health Nurse to provide them with support and information after an infant death. This is when the focus needs to be on supporting the bereaved, not judging them or educating them about Safe Sleep. Grieving SIDS parents need to know that they have done nothing wrong. Today, parents have access to the American Academy of Pediatrics Safe to Sleep Guidelines (this information should only be provided to parents who haven’t experienced a loss) which can help reduce their baby’s risk of dying of SIDS. The important thing to know is that babies can still die of SIDS even if every single safe sleep recommendation is followed. Some babies have parents who don’t follow any Safe to Sleep practices yet they continue to grow and thrive. It was a mystery in 1993 and now, 23 years later, there still is no cause of SIDS and no way to prevent it. Our only hope is to educate as many people as we can about Safe Sleep risk reduction and SIDS and provide support to grieving parents to help them survive the most devastating loss of their lives.
If you work with young families, the bereaved, or just want to learn more about SIDS or Safe Sleep come to our 1 day conference event on October 6th in San Diego at the Mission Valley Hilton. Find out more information 36SIDSCalifornia on Facebook.