Every year, around 400 kids (ages 1-18) in the U.S. die without explanation; every year, around 400 families are devastated and try to get through the day. These numbers will grow as more cases are identified (via awareness, education, and research), as these numbers are likely greatly underestimated.
Knowledge of SUDC in the medical community and general public is extremely scarce. At this time, researchers do not know what causes SUDC, how to predict it or how to prevent it. Research is crucial, however no public funding of SUDC research currently exists.
The SUDC Registry and Research Collaborative (SUDCRRC), based out of NYU Langone Health in collaboration with Columbia University Medical Center and Mayo Clinic, is spearheading research efforts through private donations. There are very few other research efforts addressing SUDC.
SUDC is the 5th leading category of death in children ages 1 to 4.
If more people learn about SUDC, funding will follow to allow more crucial research to occur, then causes can be uncovered, and prevention strategies can be put into place. Maybe then one day other parents won't go through the daily torture of having lost a healthy child for no known reason.
Because of inconsistencies in death certification practices and because the World Health Organization (WHO) lacks a specific way to record sudden and unexplained deaths in children that have been thoroughly investigated, it is impossible to know how widespread the problem is.