It was early morning on June 17, 2004 when Yolanda Guitar and her husband, John, boarded a plane bound for Las Vegas. The couple was looking forward to their four-day vacation, leaving their two kids – Emily, then two-and-a-half-years-old, and John Dylan, four months – in the hands of the babysitter they trusted with their eldest child since she was 10-months-old. Even before they stepped onto the jet, Yolanda admits: “I had a feeling…something was going to go wrong.”
By early afternoon, the pair reached the MGM Grand, checked in, and poked around the slot machines until a security guard approached them. He was clutching a phone. A Toronto police officer wanted to speak to John, who was led into a back room. Yolanda, meanwhile, frantically dialed the babysitter, who didn’t pick up. Instead, a police officer answered.
She doesn’t remember why she asked this (a mother’s instinct, maybe), but Yolanda blurted: “Did my son, did John Dylan, die?” There was a pause. “I’m sorry to tell you that yes, he did,” came the response.
“The whole casino just closed in on me,” she recalls.
Before leaving for their mini-holiday, Yolanda remembers the babysitter explaining that she was going to put John Dylan, a colicky baby, to rest on his tummy. “Babies sleep better on their stomachs, and are more comfortable,” she said. Yolanda had “no reason not to trust her.”
Twenty-four hours later, the Guitars found themselves at Toronto’s Hospital for Sick Children holding their lifeless son, who was wearing only a diaper. He died of Sudden Infant Death Syndrome, or SIDS, during a nap. The Public Health Agency of Canada (PHAC) describes the phenomenon as “the sudden death of an infant less than one year of age, which remains unexplained after a thorough case investigation,” including an autopsy, an examination of the death scene, and a review of the baby’s clinical history.
For Yolanda, the term is synonymous with a bad dream. Sadly, she and her husband are not the only parents who have faced this unthinkable tragedy. John Dylan was one of 84 infants who died of SIDS in 2004 across Canada, according to Statistics Canada. In Ontario, he was one of 12. Fast-forward eight years to 2012 and the number of infant deaths attributed to SIDS in Ontario was only one. According to Ontario’s Office of the Chief Coroner, roughly nine years ago, it decided to more strictly define SIDS, and require very specific circumstances in order to concretely say a death was the result of SIDS. The coroner’s office admits it’s possible this change resulted in the dip in numbers.
Meanwhile, PHAC says between 1999 and 2004, Canada saw a 50 per cent plunge in the rate of the syndrome. The national organization says the nosedive “may be attributable, in part, to changes in parental behaviour such as placing infants on their backs to sleep, and decreasing maternal smoking during pregnancy.” Efforts to raise awareness over the past decade likely contributed to these changes. The Back to Sleep campaign, announced by the federal government in 1999, encouraged parents to put their babies to sleep on their backs. Six years prior to that movement, Canada, in tandem with other organizations across the globe, recommended infants be placed on their backs to sleep.
Evidence suggests SIDS can occur as a result of a combination of genetic, metabolic and environmental factors, including an unsafe sleep space. Although PHAC acknowledges the actual cause(s) of SIDS is unknown, the most important, modifiable risk factors are maternal smoking during pregnancy and infants sleeping chest-down (both are discouraged).
That nap 10 years ago was the only time John Dylan was put to sleep on his belly, Yolanda says. The Toronto resident always put her children to bed on their backs. In fact, just after giving birth to Sarah, the child she had after John Dylan, she noticed her newborn had been placed on her side. Recovering from a caesarean section, Yolanda pressed a call button, and asked another nurse to put Sarah face up. “What’s the hospital policy…should babies be put to sleep on their backs, sides or chest?” the new mom remembers asking the nurse, who replied: “We don’t really have one. Babies should be on their back, but some nurses will do what they think is best.”
This kind of inconsistency, which still exists today, was the catalyst behind the Registered Nurses’ Association of Ontario (RNAO) best practice guideline (BPG), Working with Families to Promote Safe Sleep for Infants 0-12 Months of Age. The BPG’s panel of experts sifted through and analyzed years of research to create the document. “Parents will do what they see and not always what they hear,” Yolanda says. The mother of three (she had two more children after John Dylan died) was on the guideline’s advisory committee, a group to which the panel of experts looks for feedback and insight. “(That’s why) modelling of behaviour is critical in the hospital.”
Nurse practitioner (NP) Elyse Maindonald agrees, adding nurses at all levels of the health system should be aware of best practices. The chair of the BPG panel says an essential piece of the guideline urges nurses to model safe sleep practices by placing infants on their back for every sleep, unless there are medical reasons for doing otherwise. The guideline also advises nurses to reflect on their knowledge, judgement, perceptions, practices and beliefs when it comes to safe sleep environments.
“Nurses are closest to babies and mom(s),” Maindonald says. “People look up to nurses.” And evidence has found nurses are key when it comes to modelling safe sleep practices.
The BPG recommends that, when it comes to sleep, babies should be snoozing alone, on their backs, in a crib that meets Canadian safety standards. The “back is best” approach applies to children under the age of 12 months. Cradles and bassinets with sides that allow air flow are also considered safe spaces. Sleep surfaces not recommended? An adult’s bed, sofas, couches, armchairs, playpens, swings, strollers, slings and car seats.
Caregivers are also encouraged to avoid using blankets, pillows, positioning devices, head coverings and soft toys because all can obstruct an infant’s airway. “Anything that improves the infant’s access to good-quality air and nothing to block the intake of that air is what (nurses) want to get across,” says Maindonald. A firm mattress and fitted sheet are all that’s needed, according to the guideline. Breastfeeding is also recommended as a protective factor against SIDS; smoking (before, during and after pregnancy) is not.
Maindonald reinforces the BPG’s aim is to “clarify myths and misconceptions (to help) give parents the very best information that’s available at this time,” so they can make informed decisions.
A Windsor primary care NP, Maindonald has spent the last 25 years researching SIDS, an interest born out of personal experience: her cousin and mother-in-law each lost a child. She has worked in emergency departments and intensive care units over four decades in the profession, and says it’s impossible to forget the babies who have died while she’s been on shift. “It’s gut-wrenching,” she says. “Even as a nurse, you wonder: what could I have done differently to save that baby, to save that family from that pain?”
Maindonald anticipates RNAO’s BPG will help with just that. She’s optimistic its recommendations will be incorporated into nurses’ daily practice, nursing school curriculums, and hospital policies.
The safe sleep BPG was officially released in February 2014, but the topic has been on the minds of nurses for a number of years. Many RNs have expressed concerns with the conflicting messages parents receive about creating a safe sleep environment for their babies.
Waterloo RN Jan Levesque was one of those nurses. Some parents told her that, when they attended prenatal classes, they were told to put infants on their backs, whereas at the hospital, they saw nurses placing babies on their sides. She felt there was a strong need for clear and consistent guidelines to support safe sleep practices.
At a time when parents are vulnerable to differences in messaging, and aren’t fully aware of all the challenges of caring for a new child, Levesque says: “It’s really important everybody (is) on the same page and (is) consistent.”
Levesque advocated for this kind of uniformity through a variety of means, including a resolution at RNAO’s 2007 annual general meeting. A working group was established to help change practices and raise awareness among providers and caregivers. RNAO also identified safe sleep practices as a guideline topic priority, establishing an expert panel in 2010 that dug into the research.
Former public health nurse Helen Tindale (she retired in 2013) sat on the BPG’s panel of experts. Tindale, an early advocate for clear messaging to parents and providers, worked with moms and babies for the better part of almost 40 years. For the last 25, she worked as a public health nurse in Waterloo Region. One crucial part of her role was conducting home visits. She saw blankets, pillows and stuffed toys crowding babies’ sleep space, and talked to parents about the dangers these products can pose.
She’d watch as grandmothers put their tiny grandchildren to sleep on their stomachs, using the opportunity to explain how things have changed. “There were no car seats when your kids were little, right?” Tindale would ask. “This is the same kind of thing. Evidence has shown car seats prevent death.
We now know that…back is best for babies.”
Another practice that many parents struggle with is swaddling. RNAO’s guideline concludes: “there is currently no evidence on the “safe way” to swaddle an infant, and hence caution regarding swaddling should be expressed with parents/caregivers.”
This traditional technique to keep infants warm can be associated with risks. For instance, wrapping babies tightly in blankets can cause overheating, which can put infants at greater risk of SIDS. A blanket can also become unravelled and cover the baby’s face, increasing the risk for suffocation. If it’s too tight, it can cause hip dysplasia and limit chest expansion.
During home visits, Tindale often advised parents to spend 10 minutes burping after each feeding, holding the child upright, against the chest. Then, cradle the baby and after he/she drifts off, place them on their back in the crib. “Parents need to learn how to read their baby’s cues…they need practical, hands-on support…” from public health nurses and peer support groups, says Tindale.
Patricia Maddalena remembers when she began her nursing career 32 years ago. “Swaddling in the delivery room was something we all practised,” she says. Now, the pediatric NP at Toronto’s Sunnybrook Health Sciences Centre says “…overall, we try to impart (to caregivers) that our recommendation is not to swaddle.” A member of the safe sleep expert panel, Maddalena admits educating those who have been doing it for years, or who have witnessed or heard about swaddling’s perceived benefits, can be challenging.
When she encounters caregivers who are committed to swaddling, she asks: “When are you going to discontinue this practice?” She reviews the associated risks of loose blankets, especially when infants start to become more mobile. Some parents wonder how they’re going to keep their youngster warm, so she recommends layers of clothing. If a sleep sack is used, it must be properly fitted. “It’s imperative for families to understand what the risks are,” she says. Adopting a collaborative approach is equally important, Maddalena adds, as opposed to telling parents “this is what you have to do.”
“That’s why she likes the title of the BPG: working with families to promote safe sleep. Maddalena is thrilled the BPG also addresses immunizations and breastfeeding. Both have an impact on safe sleep, but can have consequences “beyond that context, as well. It’s an excellent document framed in the context of safe sleep that actually helps to optimize overall development and health.”
Every June 17, Yolanda Guitar and her family visit John Dylan’s grave, a 15-minute drive from home. They stop by throughout the year, too, sometimes bringing food for a picnic. In the spring, they plant white daises. Not a day goes by that Yolanda isn’t thinking about her son. “He was only on earth for four months,” she says. “I never want him to be forgotten.”
“There’s a lot of guilt (and) what-ifs,” she adds. “I don’t want anyone else to go through this.”