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 of SIDS during a nap 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, they label it SIDS (and nowadays also SUID, SUDI and undetermined). 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, resources, and information.
After a baby has died the focus should always be placed on supporting the bereaved, not judging them. When professionals who respond to a SIDS call, or a public health nurse who follows up after the loss, are educated about SIDS they will know that the best way to relieve a grieving parent’s guilt is to educate parents that SIDS is not preventable and not predictable. Parents need to know that they have done nothing wrong. Yes, the American Academy of Pediatrics Safe to Sleep Guidelines can help reduce the risk of a baby dying but there is also the possibility that doing exactly what the guidelines suggest will not stop a SIDS baby from dying. So like a seat-belt, we wear it for safety even though we rarely need it.
The Safe Sleep Guidelines are available to reduce a baby’s risk but SIDS still cannot be prevented. If you are caring for an infant, educate yourself and share the safe sleep guidelines with anyone else who cares for your baby. And if a baby has recently passed suddenly and unexpectedly, there is no need up the guidelines until you are assured the grieving parent understands that they are not to blame. As a SIDS parent, my only hope is to educate as many people as I can about Safe Sleep risk reduction and provide support to grieving parents to help them survive the most devastating loss of their lives.