How you can join a groundbreaking, bipartisan effort to save children’s lives
The United States House of Representatives and Senate have taken a major step in the fight against sudden, unexpected, and/or unexplained infant and child deaths by introducing the Scarlett’s Sunshine on Sudden Unexpected Death Act. The legislation has growing support in the House and Senate with nearly eighty cosponsors from both sides of the aisle. As president and founder of the Aaron Matthew SIDS Research Guild (AMSRG), I have visited Washington, DC, several times to meet with lawmakers on this issue and I am always incredibly moved by the bipartisan show of support we receive. While these moments are always encouraging and worth celebrating, we need your help to get the bill across the finish line. Keep reading to learn how you can take a few simple steps to lend your voice to this cause.
Senator Bob Casey, who is leading the charge in the Senate, explains in a press release that this measure would supply grants to help states, municipalities, and nonprofits improve data collection and death scene investigations related to unexpected infant and child deaths. It would promote safe sleep practices – shown to reduce deaths – and ensure death reviews are completed for 100 percent of infant and child fatalities. Believe it or not, today there are no national standards for investigating and collecting data following an infant or child’s death. This makes it extremely challenging to determine the causes, and what can be done to prevent these tragedies. But the good news is that this is a problem we can solve through the legislative process and tight partnership between government and the private sector.
Scarlett Lillian Pauley in 2016. Photo courtesy of Stephanie Zarecky and the SUDC Foundation
The bill is named after Scarlett Lillian Pauley, who tragically passed away in 2017 in Pittsburgh, Pennsylvania when she was just 16 months old. Scarlett’s passing is considered Sudden Unexplained Death in Childhood, a category of death in children over the age of one year which remains unexplained after a thorough investigation and autopsy. Today, Scarlett’s mom, Stephanie Zarecky works for the SUDC Foundation, which promotes awareness, advocates for research, and supports those affected by sudden unexpected or unexplained death in childhood.
“Our lives were shattered when our beautiful, healthy, thriving daughter, Scarlett, went to sleep and never woke up. And we do not know why,” according to Stephanie. “Losing a child is the single greatest pain we could ever imagine and living without answers magnifies the tragedy exponentially. We try every day to spread Scarlett’s Sunshine, allowing her memory to shine on and bring light to SUDC, the medical mystery that took her from us. We thank everyone who is working tirelessly to make this legislation law in memory of Scarlett and all infants and children lost suddenly and unexpectedly who are deeply loved and missed.”
Stephanie is also a former press secretary for Sen. Casey, who first proposed the legislation in 2018. “I wanted to honor Scarlett’s memory and make sure that the federal government is taking all possible steps to ensure that no family will have to suffer the death of a child, without knowing why,” he said in 2018. “It’s appalling that over 400 children and over 3,600 infants each year are dying from these unexplained causes.”
My wife Heather and I know firsthand the pain a parent feels losing a child to unexplained and unexpected causes, losing my only son Aaron Matthew to SIDS some 15 years ago. This impacts all parents, grandparents, and is clearly a bi-partisan issue that needs to be solved.
Senator Casey has our gratitude for his leadership in the Senate, as do Representatives Gwen Moore and Tom Cole, who introduced the legislation in the U.S. House of Representatives where Rep. Moore spoke eloquently about it in her press release.
“No one deserves the heartache of losing a child,” Rep. Moore said. “Not knowing the cause only compounds this awful pain. This issue hits close to home for me as my own state, Wisconsin, struggles with high infant mortality rates among African Americans.”
Finally, I want to thank all the bill’s lead and co-sponsors in both chambers for their work on this legislation (including Rep. Cathy McMorris Rodgers, pictured left). This has been a truly collaborative effort, between AMSRG, SUDC Foundation, Cribs for Kids, volunteers from Microsoft Government Affairs, Cornerstone Government Affairs, and 15 of the world’s leading Sudden Unexplained Death in Childhood (SUDC) and Sudden Infant Death Syndrome (SIDS) researchers.
You can help in a powerful way. Please take a few minutes to contact your U.S. Senator and U.S. House member, and ask them to please support the Scarlett’s Sunshine on Sudden Unexpected Death Act: H.R.2271 and S1130. The legislation recently had a hearing in the House and has already passed unanimously out of committee in the Senate where it has since been placed on the Senate calendar for consideration. We are closer than ever to seeing this bill become law and your engagement now can help us make that a reality.
As always, we are grateful for your support of the Aaron Matthew SIDS Research Guild of Seattle Children's (AMSRG) where 100% of your contributions support innovative and critical research by the top SIDS medical researchers in the world, including those at Seattle Children's Hospital, with volunteer support from data scientists at Microsoft. All of these talented individuals are working to find the causes of, and ultimately preventative measures for, the unexpected or unexplained deaths of children. Together we will ensure that no parent ever experiences the loss of a child again or worry theirs will be next.