© 2011 St. Louis Post-Dispatch

On a late spring day, Julie Clifton dressed her baby boy Nathan in a blue and black onesie, drove him to his nearby home day care and gently kissed him goodbye.

Hours later, she got a phone call at work. Nathan, who had been a healthy 3-month-old that morning, went down for a nap and didn't wake up.

In the last several years, dozens of Missouri families have dealt with unfathomable losses in the very places they were assured their babies' safety would come first: paid child care.

From 2007 through 2010, at least 45 children - most of them infants - died in child care for reasons other than existing illnesses.

Of that total, 35 deaths occurred as the babies napped, sometimes just days after parents nervously left them for the first time in child care.

In the aftermath, some parents were told the deaths were isolated and unavoidable accidents.

But a Post-Dispatch investigation found that in most of the sleep deaths, caregivers failed to follow basic safety steps that might have saved lives.

Some didn't know the dangers of letting babies nap on their abdomens, or near blankets or on adult beds. Others knew the risks, but discounted or dismissed them.

The investigation further found a systematic failure in Missouri to prevent the deaths, rooted in some of the weakest child care regulations in the country. Missouri's child care oversight is so inadequate that state regulators lack the information and the authority to address the problem.

That's because the vast majority of deaths occurred outside the reach of state oversight, typically in unregulated home day cares.

Of the 35 sleep-related deaths in child care, all but four occurred in unlicensed day cares. There are no inspections in such settings, and caregivers are not required to meet simple sleep safety standards that have been credited with saving lives in other states.

And documents show that even after a child dies, the subsequent investigation often declares the death as unavoidable even though safe sleep standards weren't met.

Consequently, the public - and lawmakers - are unaware of the deaths. Even parents often don't know the circumstances leading to their children's deaths.

Take Julie Clifton, who learned two years ago in a medical examiner's report that Nathan died June 2, 2009, of sudden infant death syndrome - a cause of death that is supposed to apply only when babies mysteriously die in their sleep with no other suspected cause.

SIDS should not be the finding when known sleep hazards are present, including placing infants to sleep on their abdomens, some experts say.

The Cliftons read the term SIDS and assumed there had been no way to prevent Nathan's death.

So they stopped asking questions of police.

In June, the Post-Dispatch provided Julie Clifton with a copy of the police report on Nathan's death.

She said nobody - not the caregiver, not the police, not the medical examiner - had told her that Nathan was found with his face in a pillow.

IN THE DARK

Records obtained by the Post-Dispatch show that in the majority of the sleep deaths, an infant was napping or placed in an environment where at least one risk factor for suffocation - such as a pillow - was present.

Such was the case when a caregiver in Lee's Summit, Mo., placed Joey Doss on an oversized couch for a nap. Or when a St. Ann provider put Henry Brenner on an adult bed to sleep, even though his mother said she told the caregiver to always use a crib. Or when a Jefferson City caregiver placed Cooper Phillips on a bed and surrounded him with body pillows to prevent him from falling.

"What some people try to do is to make a cozy spot for them to sleep," said Suzanne McCune, a former child death prevention specialist for the state in the St. Louis County medical examiner's office. "What they did was make a death trap."

The Post-Dispatch attempted to do what Missouri's child care system has not - provide a clear and public accounting of deaths in child care. The newspaper compiled public documents on the 45 known cases, piecing together the identities and circumstances in as many of the deaths as possible.

Information on those deaths was filed in separate state and local offices. Details often were not shared with regulators or the public. As a result, in 15 cases, the name of the child and child care provider were not released.

The system makes it nearly impossible for parents considering day care in Missouri to determine whether a child has died in a facility - or whether most providers follow proper safety standards.

Julie Clifton remembers the nagging worry she felt in the weeks after her son went into care.

Clifton had noticed that the caregiver had opened her backyard pool, drawing lots of teens to the home.

"I thought there were too many kids there," Clifton recalled. "She's got a pool open. She's got kids coming over to swim - how was she supposed to watch my child and the kids swimming?"

Clifton wanted to find another day care for her son. Nathan died before she got a chance.

Nathan's Florissant caregiver, Belynda Frame, had put him down for his nap on a futon, rather than in a crib.

 

Frame, contacted by phone, said she typically used a portable crib for Nathan's nap, but a mattress support had broken, and "the middle of it had completely collapsed." She considered putting Nathan down in a car seat but decided on the futon.

"I put him in there and had one of the smaller pillows so that he couldn't fall off," Frame said.

She said she felt she did everything she could to keep the baby safe.

LAX OVERSIGHT

Missouri is near the bottom of national rankings on child care regulations. The state gets low marks both for its lack of meaningful safety standards and its generous exemptions from licensing.

Child Care Aware of Missouri estimates that 60 percent of children in child care are in homes and centers that are unlicensed. More than 4,500 such facilities are known to be operating. But industry experts think the number is much higher. No reliable number is available, because those child cares aren't required to register with the state.

Providers need a license only if they care for five or more children unrelated to them. The state exempts children related to the caregiver from the count, regardless of the number. Few states allow so many children in unlicensed facilities.

Unlicensed child cares accounted for nearly 90 percent of the 35 sleep related deaths in Missouri from 2007 through 2010. The Post-Dispatch also found a disproportionate number of other preventable deaths in unlicensed care. For example, all seven deaths attributed to child abuse occurred in unregulated settings.

Experts say that regulation and licensing alone can't always save children's lives.

But when it comes to sleep deaths, research shows that training and enforcement of simple sleep safety standards work.

Rachel Moon, a pediatrician and SIDS researcher with the Children's National Medical Center in Washington, said the problem is particularly acute with unlicensed home caregivers who lack training and are unaware of current research on safe sleep.

Although there is still no known cause for SIDS, studies show some infants can die when they rebreathe their own exhaled carbon dioxide trapped within soft bedding such as blankets, mattresses or pillows. They are particularly vulnerable in new, unsafe sleep environments, such as those sometimes found in the first few days of child care.

The Post-Dispatch found four cases in which infants died within two weeks of starting child care.

Moon published a landmark study in 2000 concluding that day care settings posed a proportionately greater risk to infants.

She found that 20 percent of SIDS deaths occurred in child care settings. The rate should have been closer to 7 percent, given that children typically spend more than twice as much time at home, where they do most of their sleeping.

The research prompted immediate action in some states. Within a year, Minnesota mandated safe sleep training for caregivers. And its rate of SIDS deaths in child care plummeted from 40 percent to just 2 percent.

"I didn't think (the regulations) would do much," said Kathleen Fernbach, director of Minnesota SID Center at Children's Hospitals and Clinics of Minnesota. "The reality was, we had a major turnaround."

Missouri does not require licensed providers to have formal training in safe sleep practices.

Comparing the rates of sleep deaths among states is difficult because states classify the deaths differently and a national databank is incomplete. But SIDS prevention educators in Illinois believe that regulations on the books for a decade there have reduced deaths.

Pam Borchardt, a former executive director of Sudden Infant Death Services of Illinois, estimates she saw five or fewer sleep-related deaths a year in licensed and unlicensed care. Illinois has more than twice as many children under 5 as Missouri, yet Missouri had 15 such deaths in 2007 and 14 in 2009.

Missouri added rules only in August requiring caregivers to place babies to sleep on their backs - and those standards don't apply to most day cares, the majority of which are exempt from regulation.

The percentage of SIDS deaths in day care in Missouri has remained high, exceeding the 20 percent rate Moon found elsewhere more than a decade ago.

From 2007 through 2009, 24 percent of SIDS deaths in Missouri occurred in day care.

"It is critical that whoever is regulating these child care providers - they have to make it a priority to develop these regulations," Moon said.

LOOSE ENDS

Advocates of strong child care regulation call for a system in which states conduct a thorough investigation of each death - one that sanctions negligent caregivers, warns the public of dangers and spells out steps that can be taken across the system to protect other children.

But in Missouri, where most day cares are exempt from any state oversight, that's not happening, the Post-Dispatch found.

Even when a child dies in a fully regulated and licensed day care, the state is limited in its ability to take action against the caregiver or notify the public.

The state Department of Health and Senior Services investigates when deaths occur in licensed day cares. But it will release a report to the public only if the provider was found to have violated a child care regulation. That includes cases in which children die of sleep-related causes.

But Missouri has minimal sleep safety rules even in its licensed centers. So when a child dies while napping, regulators typically don't find a violation, and investigative files remain sealed.

Of the four sleep-related deaths in licensed child care from 2007 through 2010, files were released on just one death.

Child care licensing has no public files for the three others, including Bryan Mendoza, 4 months. He died of undetermined causes in 2010, while napping on his abdomen in a licensed in-home center operated by Earlene Tyson in Grandview, Mo.

State officials say caregivers such as Tyson are entitled to privacy if rules have not been broken. But parents might want to know that another child died in Tyson's care five years earlier.

Police and medical examiner records show AAliyah Walker, 3 months, died of SIDS in Tyson's care in 2005. Regulatory documents pertaining to that  investigation were also sealed from the public.

Tyson declined to be interviewed.

The investigative response is even weaker when a child dies in a day care that is unlicensed. In those cases the Department of Health and Senior Services usually lacks the authority to conduct an investigation. And unless there is a suspicion that the providers were caring for too many children, the department is not notified of the death.

For example, the department had no information or would release no information on Kalen Mallett, 2 months, who died in 2007 while sleeping on his side covered by an afghan in a St. Louis home day care.

The task of investigating deaths in unlicensed day cares falls to other state agencies and police - none of whom are specifically charged with scrutinizing the quality of care.

The state does have a child fatality review system that convenes local panels of police, doctors, pathologists and others to scrutinize nearly all child deaths for signs of foul play.

For years, Missouri's highly regarded Child Fatality Review Program has released annual reports with a paragraph noting concerns about sleep-related deaths in child care.

But the program wasn't intended to take action against negligent caregivers or alert the public of dangerous day cares.

In fact, the program's findings on individual deaths are almost entirely confidential. The program produces summary sheets that typically identify the child, the date and county of death, but little else. Sometimes, though, those summaries are not completed so no information about a child's death is publicly available.

That means parents can't easily piece together the details of their child's death.

Nor can parents seeking day care reliably know whether a child has previously died in a caregiver's home.

"If a child passes away while at day care, as a parent, I would want to know," said Lisa Barton, who lost her infant daughter Macie in a Lee's Summit day care in January. "It needs to be public knowledge."

INCONSISTENT STANDARDS

Amid spotty documentation and lack of public information, the Post-Dispatch further found inconsistencies in the way jurisdictions investigated sleep deaths.

And sleep death experts such as James Kemp, a pediatrician at Washington University School of Medicine, believe those discrepancies probably cause state officials to underestimate the number of preventable sleep deaths in child care.

The newspaper found cases in which children were determined to have died in their sleep of natural causes like pneumonia when records point to known suffocation risks.

For example, Macie Barton, 3 months, was ruled to have died suddenly Jan. 25, 2011, of viral pneumonia in her day care, even though Kemp says that condition rarely causes sudden death. Her mother had taken Macie to the pediatrician that morning for a follow-up on an ear infection and said she was just fine. Barton said the medical examiner discounted Macie's unsafe sleep environment. She died while napping in a swing.

Kemp and other researchers say too many deaths are inaccurately ruled SIDS when clear evidence of sleep dangers are present.

The Post-Dispatch found documentation of sleep dangers in most of the cases ruled as SIDS.

For instance, Bradyn Fuerst-Schanuth died while napping in a swing in his unlicensed Jefferson City day care. His death was ruled SIDS, even though experts identify sleeping in a swing as a risk factor for sleep deaths.

Ava Brown was determined to have died of SIDS despite being placed on her abdomen - a position that some sleep experts say should exclude SIDS as a cause of death.

Kemp called SIDS rulings "a total crapshoot" because most coroners and medical examiners fail to look at the sleep environment.

He said continued misdiagnosis across the state has led to confusion and complacency about sleep death prevention.

"There is still the common idea if you call it SIDS, it's not preventable, and it's clearly not the case," Kemp said.

After Nathan Clifton's death, his caregiver, Belynda Frame - like so many of the unlicensed providers in whose care babies died - got no safe-sleep training.

Like the Cliftons, she was told that Nathan died of SIDS, even though his death might have been preventable.

She believes there was nothing she could have done to change things.

In any case, she said, she is no longer caring for babies.

"I'll never watch another infant as long as I live," she said. "It scares me. I won't do it."