When Stephanie Zarecky's daughter Scarlett was about 16 months old, she and her husband put her to bed with a mild cold and fever. Hours later, they discovered she had stopped breathing. Doctors had no explanation for what happened, and even now, going on two years since she lost Scarlett, Zarecky has no more information on what happened to her daughter. Infants and children like Scarlett die from unexplained causes at an alarming rate in the United States — but soon, Scarlett's Sunshine Act could begin a unified quest for some answers.
This category of death is called Sudden Unexplained Death in Childhood (SUDC), or Sudden Unexpected Infant Death (SUID) when it happens to infants under 12 months old (Sudden Infant Death Syndrome, or SIDS, falls under the SUID umbrella). Per the Centers for Disease Control and Prevention (CDC), 445 children fell under the SUDC category in 2016, while 3,600 died under the SUID category. A death is classified in this way if a thorough investigation — including an investigation at the scene of the death, an autopsy, and a dive into the family's medical records — reveals nothing, as happened in Scarlett's case.
"When you determine a cause, then you can do tests, and then you have results, and then you have answers," Zarecky tells Bustle. "Whereas in the case of SUDC and in particular of Scarlett, the answer is that there is no answer."
According to the CDC, SUDC ranks as the fifth leading category of death among 1- to 4-year-olds in the United States — SUDC itself is not a cause of death, but instead an umbrella term referring to all unexplained deaths. Black infants and children die at much higher rates than children of other races in cases classified as SIDS or SUDC, according to The Nation.
"It’s just sad to me, it’s shocking, it’s a whole lot of emotions going to the fact that our federal government has not addressed this in research or public health or awareness," Laura Gould Crandall, the president, executive director, and one of the co-founders of the SUDC Foundation, tells Bustle.
There's reason for optimism that will change soon, though. Scarlett's Sunshine Act, a bill that would support efforts to understand and eventually prevent SUID and SUDC, is currently working its way through the House, and lead sponsor Rep. Gwen Moore (D-Wisc.) believes it could pass before newly elected representatives join in January.
"I think this bill has a fantastic prospect of passing on a bipartisan basis," Moore tells Bustle. "This is a bipartisan tragedy, and there are so many of our constituents who’ve spent a lifetime in unresolved grief when they’ve lost a child to SIDS."
The Scarlett's Sunshine Act would direct money toward surveillance of SUDC and SUID, allowing the government to collect nationwide data on the broadest possible scale that researchers will then be able to analyze, Crandall explains.
"We need to understand it from a public health point of view, and we need to understand it from a national data perspective," Crandall says. "How are we learning the most from these tragedies to prevent other ones from coming forward? Right now we’re just not doing that."
“The importance of this bill is that you learn and develop best practices," Moore adds. She points out that when it comes to SUDC and SIDS, even the people most closely involved in the cases — coroners, medical examiners, the CDC — still really don't know what's going on.
“They’re just as baffled as others are about root causes," Moore tells Bustle. The information collected under the terms of the bill, Moore says, is "data that we need in order to reduce this kind of death.”
The bill would also provide support for families who undergo this particular form of trauma, which Zarecky explains as both isolating and, essentially, never-ending.
"When you lose [your child], you need to know why," Zarecky says. She and her husband now have a second daughter, Eliana, and she says the anxiety caused by Scarlett's death follows them as they raise her. "Every single fever, or cough, or sniffle, or weird look … and you’re like wait, are they OK? Are they OK?"
This "profound anxiety," as Crandall explains, is what SUDC and SUID leave in their wake, and the data Scarlett's Sunshine Act would provide would be a step toward alleviating that. For both Crandall and Zarecky, though, increased awareness of the categories alone would be an important result.
“Just having that name [of SUDC] spoken on a national level is a gift," Zarecky says. "My hope is that [Scarlett's] memory is going to continue to change the world and help other families and help bring awareness to this medical mystery that took her from us.”