It’s every parent’s worst nightmare: losing a child to Sudden and Unexplained Infant Death Syndrome (SUIDS, often shortened to SIDS). No one believes it will happen to their family.
SUIDS is the sudden and unexplained death of an infant, typically during sleep. And what’s truly horrific is that there is usually no evidence of a struggle or any noise produced prior to death. SUIDS remains the most common cause of death in babies between one month and one year old, and about 90% of cases happen before the age of six months. Though the exact cause is unknown, a combination of factors appears to contribute to SUIDS. Families can greatly reduce the risk of SUIDS by practicing safe sleep guidelines outlined by the American Academy of Pediatrics (AAP).
One family with ties to Naples is doing everything in its power to make sure that what happened to their family doesn’t happen to others. After Sam and Maura Hanke lost their first baby, Charlie, at three weeks old to SUIDS in 2010, they established Charlie’s Kids, a foundation whose purpose is to educate families about safe sleep.
Following Charlie’s death, the Hanke family sought a way to remember their son while educating families about research- based safe sleep practices. Out of this desire, Charlie’s Kids Foundation was born.
It didn’t take long after meeting Sam, Maura, and their two children (Annie, 3, and Owen, 6), along with Sam’s parents, Gary and Gail Hanke, at Gary and Gail’s home in Naples, to understand the intense passion the family has for its mission. “When you experience tragedy together, there’s an unspoken connectedness. This is why we made the decision to share our story,” Maura said. “We wanted to teach people and give people a reason why they should follow safe sleep practices.”
Sam explained, “We want to inspire families to practice safe sleep. It goes beyond the ‘Back to Sleep’ message that every parent understands,” (i.e., placing an infant on his or her back to sleep). “There are relatively new ‘Safe to Sleep’ guidelines established by the American Academy of Pediatrics,” he noted, and added that while these guidelines are important, they also can be confusing.
“We created a graphic [see page 19] to simplify the recommendations,” explained Gary Hanke, executive director of Charlie’s Kids. The graphic lists dos and don’ts for safe sleep for children less than one year old. The foundation distributes stickers and magnets to make it easy for new parents to remember and internalize the recommendations.
Charlie’s Kids expanded these graphic reminders. “We decided to write and publish a children’s book and use the story of the book to spread the message of safe sleep,” Sam said. Charlie’s Kids focuses on getting the board book – Sleep Baby Safe and
Snug – into the hands of as many families as possible. Within two months of publication, the foundation distributed 50,000 copies. To date, the foundation has handed out over 2.5 million books worldwide. The book makes understanding and practicing safe sleep easy; it involves the entire family and creates a culture of healthy practices for all caregivers and siblings involved in an infant’s life. Charlie’s Kids developed the book to make the content accessible for all levels of education, language, and literacy abilities, and it aligns with the AAP’s safe sleep recommendations.
“Our goal is to expand our message as we advocate safe sleep practices to grand- parents, day care centers, and babysitters,” Maura said. “We need to hold these groups of people to safe sleep guidelines. Grandpar- ents and other caregivers aren’t always aware of new guidelines, and research-based best practices are different now than they were in decades past.”
As a mother of a four-year-old girl, I thought I understood safe sleep practices pretty well when I became a parent, but I was surprised by some of the guidelines. We all understand the importance of placing our babies on their backs to sleep, and in a crib free from bumpers, loose blankets, pillows, and stuffed animals. However, I did not realize that, according to the AAP, if your baby falls asleep in a swing, car seat, stroller, or infant carrier, it is essential to move them to their crib. “Safe sleep is hard,” Maura responded when I mentioned my surprise at my lack of knowledge. “Even though you want the best for your baby, it is hard to practice safe sleep, especially when you’re exhausted as a new parent.”
Touching lives
The Charlie’s Kids Foundation is run completely by the Hanke family and has no paid employees. “We have a working board, and our board members contribute in different ways each year,” Sam said. “We have 5-8 speaking engagements per year, and there’s nothing I’d rather do. Charlie is making a difference.” Maura shared her heartbreak at not getting to see him grow up. “We’re not going to see him graduate, get his first job, or grow into an adult. But, he’s touched so many families.”
Sam added, “We could never understand why this happened – why Charlie died. But, we’re trusting God for what we can’t understand. What we’re accomplishing through Charlie’s Kids makes me very proud, and it keeps Charlie with us even though he’s not physically with us. We share our story, and we grow the foundation. And it has only strengthened my faith.” Sam added, “It’s hard to share our story, but … it’s worth it to us. Moreover, the data shows that our statewide programs are working.”
Family Photo by Lisette Morales