At 5 weeks old, Alyzae McCulley was "perfectly healthy" and developing well, says her mother, Elise McCulley.
But without warning, Alyzae died at her Topeka home in 2005 — a victim of Sudden Infant Death Syndrome.
"I think, honestly, the hardest part of being a SIDS parent is they are perfectly healthy, and there is no answer for why they stopped breathing," McCulley said.
"I would just like people to know that this is real, and it happens to people every day."
McCulley's speaking out is part of an effort by health officials to recognize October as SIDS Awareness Month.
The Kansas Department of Health and Environment says SIDS is the "sudden and unexpected death of an otherwise healthy baby." KDHE said the most recent data, from 2009, shows that of 290 Kansas infants who died before their first birthdays, 39 of the deaths were attributed to SIDS and a category called "other sleep-related infant deaths." It makes SIDS and other sleep-related deaths the third highest cause of death among Kansas infants, KDHE said.
In Sedgwick County, the number of SIDS deaths recorded by the state averaged 10 a year from 2005 through 2009, records show. During the same five years, the state average was 45 SIDS deaths a year.
KDHE Secretary Robert Moser and other officials are trying to spread word of what they call the "ABCs of safe sleep — alone, on their back and in their crib."
In a statement about SIDS prevention, the state health department said, "SIDS is most common for infants two to four months of age who appear healthy, but die without warning during sleep."
The agency added that "babies who sleep on their tummies are at five times greater risk of SIDS and babies placed on their tummies to sleep who usually sleep on their backs are at an increased rate of 18 times greater risk."
Research has shown that most infants diagnosed with SIDS are found unresponsive in unsafe sleeping environments such as sleeping in a position other than on their backs, or sleeping in adult beds or around cigarette smoking.
The safety messages need to be followed by anyone who cares for a child — including child-care providers, baby-sitters and grandparents, said Christy Schunn, executive director of SIDS Network of Kansas. It is a nonprofit, private agency based in Wichita that provides awareness and help for grieving parents statewide.
Although the cause of SIDS deaths remains somewhat of a mystery, having children sleep alone on their back in a safe crib is thought to be the key prevention method based on the latest research, Schunn said.
Caregivers also can do other things to safeguard infants, Schunn said, including making sure the sleep environment is not overheated and having the infant sleep in a separate bed in the same room as an adult — partly to increase monitoring. The SIDS network also recommends that the child use a pacifier after one month of age, if the baby seems to like it. The network also encourages breast-feeding.
A well-ventilated room for sleeping is important because the baby shouldn't be re-breathing exhaled air, Schunn said.
On its Website — sidsks.org — the network provides a video on how to create a safe sleep environment.
People needing bereavement help or information from the network can reach the agency by calling 316-682-1301.
Emma Richmond, president of the network's board of directors, lost her son Josh to SIDS in 1995.
"He was our first child and ... everybody doted on him," Richmond said. He was the first grandchild in the Richmond family.
"And you think you have a healthy, wonderful, happy little boy."
At 9 months old, Josh was beyond the period for the highest risk for SIDS.
He died at his child-care home. He had been taking a nap in his crib there and ended up on his stomach even though the provider didn't place him that way, Richmond said.
She shares her experience not to scare parents but to make them aware, she said.
"We did everything we could have done, and it still happened," she said. "It happens, and it's not necessarily the parents' fault."