The sudden, seemingly unexplained death of a baby rattles thousands of families each year. When the child is less than one year old, the phenomena is called Sudden Infant Death Syndrome or SIDS. But after twelve months, it's called Sudden Unexplained Death Syndrome.
However, a genetic breakthrough may spare future heartbreak.
"I would find myself having panic attacks. I was constantly checking on her. I had a few of those heart stopping moments where she seemed a little too still." Elizabeth Glatzel was sick, worried "it" may happen again. Her first child, Lilly Grace, died just before her second birthday.
Doctors said the cause was labeled SUDS or Sudden Unexplained Death Syndrome, kind of like SIDS for growing babies.
Scientists at the Montifiore Einstein Center for Cardiogenetics broke the lock on the SIDS mystery, discovering so-called "genes of death."
They found a gene that forms a defective protein. That protein causes an electrical problem in the heart, which can trigger sudden death. Doctors say the genetic defect explains 30 percent of SIDS cases, and more than half of SUDS deaths.
Now families like the Glatzel's can get their DNA tested. If the defect is found in another child, doctors can diagnose and dole out meds and in some cases, even before a baby is born.
Elizabeth's daughters Emily and Helena both tested negative, meaning the genes of death were not passed on. That eases mom's grief just a little, while saving the life of the next "Lilly."
Researchers are still looking for other genes that might explain the rest of SIDS cases. It is believed they will be able to crack the entire genetic code of SIDS within the next five years.