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Liz Montgomery doesn’t get much rest.
Her role as the executive director of the Northwest Infant Survival and SIDS (Sudden Infant Death Syndrome) Alliance and Inland Northwest SIDS Foundation keeps her on the go and on the road. This winter, she was in Washington, D.C., advocating for legislation; earlier this month she was in Seattle for fundraising; last week she was doing a training at a hospital in Lewiston.
This is Montgomery’s life now, a tireless pursuit to inform, educate and empower families expecting babies with the information they need about safe sleep so that no one has to go through what she did back in 2003.
Montgomery gave birth to her son, Mason, in November 2002. He was healthy and happy, and she spent three months of maternal leave with him when he was born. She was a teacher at the time in the small Idaho town of Avery, where she taught elementary-level students. She dropped her son off at a neighbor’s house every day, and she never forgets that April day when her neighbor had asked her if she wanted to get the Pack-n-Play for Mason to nap in. Montgomery said no. He always would nap on the couch so that he could be in the same environment as at home.
Midday, a school secretary pulled Montgomery from her class.
“Mason is not breathing,” she said. She drove Montgomery to the apartment where Mason was, and paramedics were already there trying to revive the infant, doing CPR on the floor. Lifeflight was on its way. Mason was flown first to Kootenai Health then Sacred Heart Medical Center. Doctors successfully got his heart beating again, but he was put on life support.
Montgomery and her then-husband had a difficult decision to make.
“The doctor said that babies’ hearts can go for a long time because they are brand new, and they can go on for days, and I think they did two or three brain scans, and there was no brain activity, and you could tell his spine was shutting down, so everybody came,” Montgomery said.
Family and friends joined her at the hospital to say goodbye to him. An autopsy and toxicology report was run on Mason, but no death scene investigation was ever conducted, a vital part of understanding how infants die today, Montgomery said.
“At that time, they didn’t really do them. It was more any time a baby died, they don’t want to intrude with the family. They did an autopsy and didn’t find anything, or they did a toxicology (test) and didn’t find anything, then it’s, ‘Sorry your baby died of SIDS,’ ” she said.
At the time, there was little information or research about what caused SIDS or contributed to it.
“Basically what you were told back then as a parent of a SIDS baby is that, ‘There is nothing you could have done. We don’t know how your baby died or why your baby died, it’s just something that happens,’ ” Montgomery said.
Nearly a decade later, the National Institutes of Health launched the Safe to Sleep campaign, including warnings to soon-to-be parents that infants should not sleep on soft surfaces, like couches or share beds with adults. Montgomery had been doing her own research along with volunteering at the SIDS Foundation of Washington at the time. She got support from the foundation after Mason died.
Montgomery knew her son had napped on the couch the day he died, and she worked up the courage to request the police report.
“Baby found face into the back of the couch with heavy quilt on top of him,” Montgomery said, quoting the report. She remembers her anger in that moment, reading the report.
“He didn’t just die from this unknown thing. Just read the report. Why am I being told my baby died of this syndrome, when all you have to do is read the report and see how he was found?” she said.
The report brought Montgomery some closure about her son’s death, but it also lit a fire of advocacy that still burns as she fights for more education about safe sleep for infants and for the community to avoid completely preventable infant deaths.
“I could be way further along in my healing, because you don’t really heal from this, but it didn’t have to start so late,” she said. “I totally believe that parents deserve to know how their babies die. They absolutely deserve it.”
The foundation and alliance are set to merge under one name, Safe Start, with Montgomery as the executive director in 2020. Currently, the nonprofit offers free monthly classes at its Coeur d’Alene office to parents, grandparents and caretakers of infants on safe sleep, offering sleep sacks, which are wearable blankets, and cribs to families that need them.
Montgomery trains community partners from hospitals to paramedics, so that they can offer the same training in their communities throughout the Pacific Northwest, providing sleep sacks and materials if groups need them. Beyond education, Safe Start offers a program for grieving parents and holds support events for families throughout the year. Recently, Montgomery and her partner, Brian Rauscher, expanded their safety efforts to include car seats.
Nationally, there were 3,600 sudden unexpected infant deaths in 2017. The majority of these deaths are categorized as SIDS or “unknown.” Dr. Kathleen Webb, who serves as the medical officer for the foundation and as a board member, said those numbers could be different if full death scene investigations were conducted when an infant dies. Webb, a retired neonatologist, met Montgomery when she volunteered to certify hospitals through the Cribs for Kids program more than a decade ago.
“I realized what a treasure she is,” Webb said. “She is completely dedicated to this. This is her life’s work. It’s people who have had this devastating experience that lead the fight to stop this.”
Washington had 333 unexpected infant deaths from 2013 to 2017; Idaho had 97. There are certain regions in Idaho and Washington that Montgomery focuses on, particularly the Panhandle and Moscow region in Idaho and Spokane and Pierce counties in Washington.
In 2018, there were six cases in Spokane County reported by the medical examiner’s office, and so far in 2019, Montgomery is concerned about the number of cases she has been referred. When a family loses an infant, they are referred to the foundation for follow-up if they want supportive services.
Montgomery moved to Rathdrum in 2009, working full-time doing home visits for Head Start. The SIDS Foundation of Washington pulled back its Eastern Washington outreach in 2011, and Montgomery decided to set up her own nonprofit to continue to support nearly 100 families in Eastern Washington and North Idaho. She started slowly, spending hours working for her foundation, bringing on board members and organizing another fundraiser.
Fast forward to 2019, and the Night Under the Stars fundraiser in Coeur d’Alene in August raised $80,000 to help the the nonprofit provide training, education, sleep sacks and cribs. The steady stream of funding enabled Montgomery to start working full time at the foundation two years ago.
In 2018, the Inland Northwest SIDS Foundation supported 273 local families and graduated 1,303 people from its Safe Sleep class. Montgomery loves teaching classes and empowering soon-to-be parents with resources they need. She remembers a woman, who is an attorney, pregnant with twins in a Safe Sleep class this winter who sat wide-eyed through the whole presentation. She had bought supplemental mattresses for her babies as well as an inclined swing for them to sleep in, both not recommended by the American Academy of Pediatrics. The woman, her mother and grandmother all learned the safest ways for the twins to sleep that day.
“What keeps me going is my passion and my love of families and children and the need for education on safe sleep,” Montgomery said. “These families deserve to know, these babies deserve to see their first birthday, and nobody should have to live with the heartbreak of a baby dying. Nobody.”