Testimony before the: Ohio State Senate Medicaid, Health and Human Services Committee

Sudden Infant Death Syndrome (SIDS)
CHARLIE’S KIDS FOUNDATION Maura Hanke Charlie’s Mom and Board Member

Wednesday, October 9, 2013 9:00 AM South Hearing Room The Ohio Statehouse

Good morning. My name is Maura Hanke, and I am the mother of three children and the cofounder of a safe sleep organization known as Charlie’s Kids. Thank you, Senator Jones and fellow committee members for inviting me here today to share my story. I appreciate your efforts to reduce infant mortality. As difficult as it is to tell my story, I strongly believe it is a story you need to hear. It is a story that I hope all policymakers, health care workers, and especially new parents, hear in an effort to make sure that no other mom or dad has to live through the nightmare that my husband and I did. Of the countless trials any parent must endure, perhaps none is more heart wrenching than the tragic and sudden loss of a child. No matter the age, the death of a child will test one’s faith to its core, and forever leave a broken heart. Of course, sometimes such a tragedy can spur action and turn sadness into a positive force for change. This is the story of Charlie, our beautiful son.

My husband, Sam and I were college sweethearts and a very happily married couple. We surrounded ourselves with friends and family, and relished in anticipation of children and a life full of love and happiness. Our dreams of parenthood came true on April 6, 2010, when we welcomed our first son Charlie Paul into the world. He was healthy and beautiful, and for us, like many new parents, the reason the sun rose and set each day. We were a normal family. I worked as a kindergarten teacher, and Sam, a pediatric cardiologist. We wished and hoped for our baby a long, joyful and happy life. We imagined his future. We made plans. After a healthy, routine pregnancy, Charlie came into the world a perfect 7lb. 11 oz. baby boy. We celebrated the day he came home from the hospital - we read him stories; we gave him baths. He brought us so much joy in everyday things. But, at just three weeks old, in the early morning hours of April 28, Charlie died, a victim of SIDS (Sudden Infant Death Syndrome) and an unsafe sleep environment. That night, like most parents, Sam sat on the couch with Charlie; the perfect picture of sleep-deprived father and son. It wasn’t unusual; we so often see this photo on Facebook -- baby asleep on dad’s chest, dad sound asleep too. But, when Sam woke up, Charlie didn’t. What we now know, that may not be realized when “liking” these cute photos is: this sleepy snuggle is actually dangerous for our babies. Co-sleeping and tummy sleeping are two of the

leading risk factors for SIDS, and this includes those innocent naps on the couch or accidentally falling asleep after nursing in the night. So, when parents are trying to calm a newborn at 2 a.m., or sneaking a few extra zzz’s during the day, we want them to think of Charlie. We want parents to know that babies are safest on their backs alone in their crib, and this has become one of our life missions. With each milestone in the year that followed the loss of Charlie, Sam and I slowly started to pick up the pieces and heal, but we needed to make sense of losing Charlie so soon. Fueled by faith and the strength and encouragement of friends and family, we looked for a bigger way to remember Charlie and most importantly try to prevent other families from suffering this same pain. Charlie’s Kids Foundation was founded on what would have been Charlie’s first birthday. The mission was clear, to raise awareness and support of SIDS by educating families, providing resources for new parents and promoting dialogue about SIDS and safe sleep practices. My husband and I lived through the unthinkable nightmare, but we now have a greater purpose to prevent additional death through education. My husband and I noted that we received a huge stack of papers, pamphlets and brochures when we were discharged from the hospital with Charlie. This was information overload, and this, combined with sleep deprivation, made learning and comprehension challenging. We knew there was an opportunity for a different approach to teaching safe sleep practices. The goal of Charlie’s Kids Foundation became a focused passion. We wouldn’t rest until we developed and instituted a new outreach for SIDS education and safe sleep education. Charlie’s Kids focused our outreach on education of the American Academy of Pediatrics (AAP) 2011 Safe Sleep Recommendations, creating the Do’s and Don’ts of safe sleep in an easy-to-read bulleted format. Armed with this list and our experiences as new parents and educators in early literacy and advocacy, the idea for a children’s book was born. We commissioned Cincinnati pediatrician and author Dr. John Hutton and illustrator Leah Busch to create Sleep Baby Safe and Snug exclusively for Charlie's Kids Foundation. The Sleep Baby Safe and Snug Board Book provides the safe sleep message in the context of a beautifully written and illustrated children’s story. Because books are often part of the traditional bedtime routine, this board book provides safe sleep instructions and reminders right before the child is placed in his or her sleeping environment.

Perhaps most importantly, unlike the traditional brochures on safe sleep new parents receive at the hospital, people will cherish this book and read it to their child numerous times - reinforcing the safe sleep guidelines. In one of Charlie’s Kids most exciting advocacy efforts, Sleep Baby Safe and Snug is now being included in every safe sleep survival kit distributed by the national organization Cribs for Kids to more than 30,000 families per year. The National Cribs for Kids® Infant Safe Sleep Initiative provides safe-sleep cribs and other safe-sleep products to at-risk families around the country, including right here in Ohio. Since first publishing our book in June, more than 70,000 books have been distributed in more than 20 states. Sleep Baby Safe and Snug is an important book for new parents and grandparents. The simple rhymes and beautiful pictures make it the perfect bedtime read. Like, Goodnight Moon, we hope families will read it over and over before they kiss their little ones goodnight. But, unlike other tales, parents will sleep soundly, too, knowing their baby is SAFE and snug. In order to support our educational efforts, Charlie’s Kids hosts a golf tournament every May to raise money to publish our book and provide materials to our partners. In addition, we have a tractor trailer traveling the country with our safe sleep message. The trailer highlights a verse from our book “Back to Sleep. I love my crib both day and night, no pillows, no blankets, just me - just right.” Partnering with Pegasus Transportation, our trailer travels over 100,000 miles per year across America’s highways with our Safe Sleep message making over 5,000,000 impressions per year.

Education is the key. We so appreciate Senator Jones’ and the committee’s efforts to educate families in the state of Ohio about infant mortality, especially SIDS. As this committee moves forward with recommendations as a result of your infant mortality research and statewide tour, we ask that the state consider the following:    Mandate that hospitals provide formal education about SIDS and safe sleep to parents during their maternity stay Mandate that educational materials be provided to all new parents as part of their prenatal care or maternity stay. Mandate that all birthing hospitals and children’s hospitals have a formal hospital-based infant safe sleep program that 1) provide accurate and consistent infant safe sleep information to hospital personnel including medical, nursing, breastfeeding, child birth education, and nutritional staff 2) enables the hospital to implement and model infant safe sleep practices throughout their facility; and 3) provides direction to health care professionals so that safe sleep education for parents is consistent and repetitive. Mandate that all licensed childcare providers be held to the same standards outlined above for hospitals and these providers be held accountable to these standards during inspection. Maryland is the first state to ban the sales of crib bumper pads, we ask this committee to consider if a similar ban is right for the state of Ohio.

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We are proud to announce that the state of Tennessee has chosen to educate families by providing a copy of Sleep Baby Safe and Snug to EVERY newborn in the state. On behalf of Charlie’s Kids, I also offer to you whatever support we may be able to provide so that new parents, grandparents and caregivers know about safe sleep and how to learn to reduce the risk of SIDS. An event like today’s hearing draws attention to this cause and provides a forum for organizations like Charlie’s Kids to reinforce the message of safe sleep. I thank you for your time today. Charlie’s Kids looks forward to working with you to help prevent this unspeakable tragedy from touching other families. Please let us know if we can provide support or assistance in your efforts. Thank you.

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