From Inexplicable Loss, NYULMC’s Laura Crandall Created Change for the Better

Mon, 2015-01-26 (All day)

Laura Crandall, who joined NYULMC last May, turned a personal tragedy into a mission to help others. Her journey took her all the way to the White House, where in December, President Obama signed into law a bill that Ms. Crandall had championed over the past six years. Her path also took her to NYULMC, where she has partnered with Orrin Devinsky, MD, professor and director of the Comprehensive Epilepsy Center, to create a program to improve research and help families who have suffered losses similar to her own.

On July 30, 1997, Ms. Crandall put her 15 month old daughter, Maria, down for a nap. When she went to wake Maria from her crib, she found her not breathing and blue. An emergency medical team arrived quickly and Maria was taken to a nearby hospital, but after heroic efforts, she could not be revived. “My thriving, happy, walking, talking, beautiful little girl had died,” Ms. Crandall said as part of her testimony before a congressional subcommittee on health.

An Imperfect System

Medical investigators came to her home to ask questions, and an autopsy was performed. Ms. Crandall is a physical therapist by training—she did her graduate and undergraduate work at NYU. Later, she realized that more tests could have been done to help identify factors that might have contributed to Maria’s death. But immediately after, reeling from an almost inconceivable loss, she recalled, “I did not know that what was and what was not done at that time would have such a lasting impact on myself and the rest of my family.”

After a two-year investigation during which an initial cause of death was overturned, no final cause was ever determined. Maria had joined the approximately 200 toddlers in the U.S. each year to die suddenly—with no explanation. “That is a tragedy of missed opportunities that I live with. I do not want to see this happen for other families in the future,” said Ms. Crandall.

Laura Crandall (third from right) is among those present as President Barack Obama signed into law the Sudden Unexpected Death Data Enhancement and Awareness Act on December 18, 2014.

Death investigations in the United States are governed by state law. Which tests are performed, what data is collected, and what is made available for tracking and research, varies widely from state to state, and sometimes from county to county. Ms. Crandall began working to change the laws in New Jersey, where she lives, to improve standardization and mandate the collection of comprehensive data in these cases.

Creating a Better Future

Working with her local state senator, Ms. Crandall’s efforts succeeded in getting a law passed in New Jersey in 2000, under then-governor Christine Todd Whitman, and a second in 2006 under then-governor Richard Codey. It was around that time that Ms. Crandall founded SUDC, which stands for Sudden Unexplained Death in Childhood. The organization, which is now an independent foundation, provides support and resources for families across the country and around the world who have lost children with no apparent cause.

Sometime in 2008, she began working on national legislation with then–U.S. senator from New Jersey Frank Lautenberg, with the goal of advancing other parts of SUDC’s mission. The lack of uniform standards in examining childhood deaths, she explained, “was not only affecting individual families in terms of the answers they could receive, it also greatly impacted the research we could do. We had incredible gaps.”

Because these deaths are relatively rare, even in jurisdictions with good data collection, there was never enough information to allow researchers to begin to piece together possible contributing factors. In 2013, Ms. Crandall happened to meet Dr. Devinsky at a conference. As part of his research into epilepsy, he and his team look at sudden unexplained deaths in that patient population, including in children. “We realized how much overlap there was in what we are trying to do and how we could help each other,” Ms. Crandall said.

A New Chapter for SUDC, and NYULMC

In May, Ms. Crandall joined NYULMC as the director of the SUDC Registry and Research Collaborative. In partnership with other institutions, including the Mayo Clinic and Columbia University, the collaborative includes a panel of forensic experts from across the country and a bio-repository, as well as resources and support for families. Its goal is to greatly advance the understanding of unexplained deaths, and create prevention measures for the safety of all children.

On December 18, 2014, after years of lobbying, advocacy, revisions to the bill, and committee hearings, President Obama signed the Sudden Unexpected Death Data Enhancement and Awareness Act (HR 669), which federally mandates standardization of investigations and data collection in these cases. “I always knew this was needed, but I was never confident it would actually happen,” Ms. Crandall said.

The new law will enhance awareness and provide for consistent data collection related to stillbirth, sudden unexpected infant death (SUID), and SUDC, which in total affect nearly 30,000 families each year in the U.S. The data will be used to inform public health and research to improve our understanding of these tragedies and assist in our prevention strategies.

The president personally extended his condolences, and gave Ms. Crandall a hug. “It was an overwhelming experience to be there in the Oval office and have the president of the United States say to me, ‘I know this is going to help a lot of people, and I’m so sorry for your loss,’” she said.

The passing of the bill was a huge validation, and a victory for all the families who’ve been affected. “We are members of the worst club in the world,” Ms. Crandall said, “and we want to do everything we can to make sure other people don’t join us.”