The handling of Sudden Unexpected Infant Death has come a long way since the city first turned attention to it in the 1970s. Peggy Regensburg, the program director of Sudden Infant and Child Death Resource Center, a Program of Public Health Solutions (also known as Safe Sleep), said that in those early days, coroners and other investigators were bewildered to what was happening.
“Typically, the pathologist would get the body [of the infant] for autopsy, they’d get a report from the witnesses, they’d get a report from the people who took pictures at the scene. They’d look at everything. They’d see a perfectly healthy infant that never should have died and they called it SIDS [Sudden Infant Death Syndrome],” she said.
Investigators began to get a clearer picture of what was causing the deaths of these infants once doll reenactments became part of investigation protocol. Reenactments of how the infants were put to sleep and how they were found opened the possibility that these babies died due to unsafe sleeping conditions: cribs that contained pillows, blankets, bumpers or toys or the even more hazardous bed-sharing.
The insight from the doll reenactments have resulted in greater public information on how to avoid SIDS.
Today the city’s infant mortality rate is down to 4.6 percent. “It really changed the face of sudden infant death education,” Regensburg said.
Safe Sleep is trying to again change the face of SIDS education and outreach. In addition delivering dynamic presentations on proper sleep environments for infants, the program is looking to use technology expand its reach to lower income communities in New York. “We were able to determine that most of these deaths occurred in the lowest income zip codes in New York City and that they actually clustered in the lowest income zip codes in the city,” Regensburg said.
In order to raise awareness the program created an app called Safe Sleep Sweep. The simple but fun game educates players on the risks of bed sharing and placing items in the infant’s sleep space. Available on both Android and Apple devices, Regensburg says that the app has amassed nearly 500 downloads so far.
Safe Sleep Sweep is only one part of Safe Sleep’s growing digital presence. In May it launched Remembering You, Remembering Us, a website for anyone who has who lost an infant to SIDS or has had a stillbirth or a miscarriage. “One of the big experiences with child loss is feeling that you no longer belong to a community you were a part of because everyone you were pregnant with goes ahead and has their babies and you are cast out from that group,” said Lea Wolf, a Safe Sleep volunteer who is greatly involved with the website. “So the idea of offering people a positive community again and have that experience of belonging and being supported is important, doing that both in virtual space and in-person.”
For the team at Safe Sleep it was very important to make this a virtual community because it allows for more accessibility. Regensburg said, “We get calls all the time from social workers in hospitals going through the same thing we are, looking for resources for folks. You have somebody in Brooklyn and your only resource for that particular thing is on Second Avenue and whatever, fifty-something street; that’s not a resource.” She continued, “We felt that nobody should be denied the opportunity to get help or at least get support going through such an awful experience and find other people who not only can help but who get it.”
Even though the site has been active for just a couple of months, the Safe Sleep staff have seen the connections made in the online group carry over to “the real world” as Wolf put it. Some participants have exchanged phone numbers. Participants can even meet up at Safe Sleep’s monthly “Walk and Talks.”
Despite the amount of resources they offer, Safe Sleep is only made up of a small team of six people, with only two paid staff members. However, they haven’t let their small size deter them from their duty. “I think one thing all of us know is how great the need is,” said Wolf. “It’s really our mission to connect people with the program and to let them know what’s available so they can access it and because so much of it exists online there is no upward limit of how many people it can serve. It’s infinitely expandable.”