Suzette Gripp was 18 and living in Memphis, Tenn., when her daughter, Sheyenne, died at three-and-a-half months of age in 1974. She was in shock and grief, but like many SIDS parents, became determined to make something positive happen from her baby’s death.

She began speaking out, educating health workers, police and paramedics about SIDS and counseling other parents. She’s helped raise money for research and even did her own survey of several hundred parents who’ve lost children in a bid to find a common thread.

“I can remember the cop that day asking me: 'Have you ever heard of SIDS?' and shaking my head. I’d read something about it in Readers Digest. I didn’t really know, and I had to find out. I’m still trying to find out.”

Particularly in recent years, she’s become concerned about the inconsistent approach used by police and medical investigators to probe and classify sudden unexplained infant deaths. She’s pushing for a mandatory national standard for death investigation of infants.

“They (medical authorities) tout the numbers going down, but those numbers are so skewed because of the reporting system that no one really knows how many babies are dying from SIDS or from other causes.”