There is no explanation for the sudden and unexpected death of a child.
Hundreds of children die in the United States each year, usually in their sleep or while resting, due to the way deaths are investigated and certified. Several hundred children between 1 and 18 years old die suddenly from unexplained causes each year.
The number of sudden unexplained deaths in children is three times greater than the number of sudden infant death syndrome deaths.
SIDS gets 20 times the amount of research funding as SUDC.
Laura Gould has been working for decades to change that. She lost her 15-month-old in 1997 and co-founded the SUDC Registry and Research Collaborative with a neurologist from New York University.
Researchers have found a potential cause for some instances of SUDC, using the database to compare the results from the autopsy and genetic data from the parents.
Researchers identified eight genes that were linked to a number of disorders.
Calcium signaling is what allows the heart muscle to contract and neurons to fire off messages.
The parents of the children who died did not show the same genes, which means they were not passed down.
The chances of a parent having two children with the same deadly variant is not likely.
The study is the largest of its kind to date, and the first to prove that there are definite genetic causes of SUDC.
Along with providing comfort to parents, new findings about genetic changes involved will accumulate with time, reveal the mechanisms responsible, and serve as the basis for new treatment approaches.
Most cases of SUDC are caused by 137 genetic variations that are linked to cardiac and ecstasy issues.
Compared to the general population, these variant were more likely to show up.
There are other explanations out there. More work needs to be done to figure out what causes the majority of SUDC cases, as the genetic variant identified in the current study was only found in 9 percent of the cohort.
A second study was conducted by the same team of researchers. They were looking for genetic variations that could be deadly.
The authors found 37 genes that are likely related to neurological, cardiac, or systemic diseases in a subset of 73 cases.
The researchers note that the presence of pathogenic gene variant does not in itself establish causality, but their findings are a highly promising start for not only providing better diagnosis and peace of mind for bereaved parents, but potentially identifying risk factors that lead to SUDC before tragedy strikes.
Along with providing comfort to parents, new findings about genetic changes involved will accumulate with time, reveal the mechanisms responsible, and serve as the basis for new treatment approaches.
The first and second studies were published in Genetics in Medicine.