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“Leo would not have died that day if he had been with me”

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Sole-Smith, Virginia
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6 May 2016
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Leo William Surratt was just 11 weeks and 6 days old when he was found dead at his babysitter’s house on May 28, 2014. But it took months for his mother, Alison, to learn the real reason why.

It was another gray fall day in Roseville, Minnesota. Alison arrived home from her job as a receptionist at a home health care agency, drifting along in the fog of loss that now surrounded her. Her husband, Ben, brought in the mail and found a large white envelope from the county medical examiner’s office. Inside was their son’s death certificate, which listed “positional asphyxia” as the cause. “I didn’t even know what that meant,” says Alison, now 26. “I’m a grieving mom, having to Google what happened to my son.”

It meant that Leo had suffocated in his sleep. “Leo was too little to lift his head or roll over,” Alison says. The death was ruled an accident; no charges have been filed against the unlicensed caregiver, a family friend whom the Surratts asked Slate not to identify. On the day Leo died, the Surratts say, the coroner had told them it was likely a case of sudden infant death syndrome, a cause assigned when a baby’s death cannot be explained by his or her medical history, an autopsy, or police investigation of the scene; recent research suggests that babies who die of SIDS may have some kind of “arousal defect” in their brainstem that prevents them from waking up. Some 1,500 deaths were attributed to SIDS in the United States in 2014, according to data from the Centers for Disease Control and Prevention. “We were devastated, but we thought, ‘It was SIDS. It was totally random,’ ” Alison says. But standing in their kitchen months later, with the official cause of death stamped on a piece of paper in their hands, the Surratts realized that although their son’s death was unintentional, it was likely preventable. Alison stared out their sliding glass doors, tears rolling down her face, losing Leo all over again.

The Surratts say they always held Leo while he slept or put him down on his back; their pediatrician had emphasized the importance doing so for Leo’s safety and because he had a hernia in his groin. “At the hospital, they even gave us a sleep sack with ‘back is best’ embroidered on it,” Alison says.

“I know for a fact, Leo would not have died that day if he had been with me,” Alison says. But he wasn’t with her, because Alison had to go back to work when her baby was just 8 weeks old.

In the United States, only 12 percent of private-sector employees get paid family leave after the birth of a child. Even the right to unpaid leave is a fairly new innovation. It was 1993 when the Family and Medical Leave Act finally guaranteed that new parents could take up to 12 weeks of unpaid leave and have their jobs waiting when they got back. Still, there were caveats: The law only applies to companies with 50 or more employees and only to those who have worked a minimum of 24 hours a week with their employers for at least a year. Just 59 percent of American employees can tick all of those boxes, according to a 2012 survey prepared for the Department of Labor. Alison’s receptionist job qualified her, but her employer offered no paid maternity leave, and she couldn’t afford to lose three months’ pay. She’s hardly alone; for every three people who take advantage of FMLA, at least one more American needs leave but doesn’t take it, according to a 2012 Department of Labor survey. And 46 percent of those workers said they didn’t take time off when they needed it because they couldn’t afford it. When Alison got pregnant with Leo, Ben was still finishing up his accounting degree at the University of Wisconsin–River Falls, balancing school with an assistant manager job at a Spencer’s gift shop, where he made just $12 an hour; after that he planned to take a paid internship at an accounting firm. Alison’s $30,000 salary covered most of their bills. “I had no option but to go back to work,” she says.

A human resources manager explained that Alison could use the company’s short-term disability insurance plan after the baby was born to receive 60 percent of her salary for six weeks, while also using any vacation days that she had accrued to supplement the rest. (Short-term disability benefits vary by state; only seven states offer government-funded plans, though others require employers to offer such a benefit. Minnesota does neither.) “But I was at the bottom of the ranks, plus I had to take time off for doctors’ appointments during my pregnancy,” she says. In the end, Alison had just enough vacation time saved up to manage one week at full pay. She took the next five weeks at 60 percent pay, which meant eliminating Internet, cable, and other expenses. She and Ben crunched the numbers and decided they could use the money they had saved from Ben’s internship to swing another two weeks unpaid, bringing her leave to two months total.

Leo was born on March 6, 2014. He was “a whiney little thing,” Alison recalls fondly, but he also smiled, laughed, and cooed early. The Surratts were smitten; Alison cried every day, thinking about her looming return to work. But by the end of her leave, money was so tight that she had to ask her parents, who both still work full time, to take them grocery shopping. She had to go back to her job. “I kept saying to Ben, you can’t adopt a puppy before 8 weeks because it’s supposed to be with its mother,” she recalls. “How was it OK for me to leave my baby at that age?”

Parents who take advantage of FMLA frequently don’t take the full three months it protects. The DOL reports that the average reported FMLA parental leave is 11½ weeks for women (it’s a little more than four weeks for men),  but almost one-quarter of women who take time off after giving birth are back on the job in 10 or fewer days. In contrast, the average maternity leave offered by countries in the European Union is 23 weeks, at 90 percent pay. In Canada, an expecting mother can take 17 weeks during her pregnancy and either parent can take another 35 weeks after the baby is born; employers aren’t required to pay for that time, but if they don’t, a public insurance program will provide 55 percent pay, up to a $537-a-week cap.

On the campaign trail, Hillary Clinton and Bernie Sanders have both framed a federal paid leave requirement as critical to economic growth. Sixty percent of workers who take partial or unpaid leave say they find it difficult to make ends meet; 84 percent report putting off spending, which creates an economic ripple effect, while 15 percent end up on public assistance while they’re out, according to a 2015 report by the DOL. The economic case was central to the passage of New York’s recent state legislation that, once fully implemented, will provide workers with 67 percent of their salaries (up to a cap) for 12 weeks of family leave; what isn’t covered by existing employer policies will be paid through a state insurance program. There may be an even more important reason to do it: A national policy for paid family leave could mean that fewer American infants die before their first birthdays.

“We know much more about the effects of paid leave on the labor market than we do about its effects on children’s health,” says Christopher Ruhm, a professor of public policy and economics at the University of Virginia and a lead author on several studies that have attempted to connect the dots between paid leave and infant deaths. It’s unethical to study infant mortality in experimental trials (since that would require creating circumstances in which babies might die), so researchers have to parse population data for trends. As a result, nobody has definitively proved that better family leave reduces infant mortality in the United States—but there are powerful correlations. Ruhm’s research analyzing family leave policies and mortality rates in European countries suggests that paid leave of around 40 weeks is predicted to reduce infant deaths by around 16 percent; the biggest drop was seen in babies ages 2 months to 12 months, but deaths in children between the ages of 1 and 5 were also reduced, suggesting longer-term benefits. After FMLA took effect in 1993, the infant mortality rate dropped by six deaths per 10,000 babies among families that were able to take advantage of the policy—a drop of 10 percent. “But when we parsed the data, we saw that this improvement only happened among babies born to college-educated, married mothers,” notes study author Maya Rossin-Slater, an economist at the University of California–Santa Barbara. “The death rate didn’t go down for babies born to low-income families or single mothers, probably because their parents couldn’t afford to take unpaid time off.”

Studies of many of the 185 countries that have enacted paid leave show similar connections: An increase of 10 paid weeks of maternity leave was associated with a 10 percent reduction in neonatal and infant mortality, and a 9 percent lower mortality rate among children under 5, according to a global analysis published in the journal Public Health Reports in 2011. Another study published in March in the journal PLOS Medicine examined a group of 20 lower- and middle-income countries in Asia, Africa, and South America, some of which had recently implemented paid leave policies. The countries’ average infant mortality rate was 55.2 for every 1,000 live births. Researchers found that every month of paid leave added was associated with 7.9 fewer deaths per 1,000 live births.

It’s unlikely that paid leave policies in the United States would have the same effect, since infants die far less often here and for different reasons. American babies are most likely to die of congenital defects, premature birth, SIDS, or injuries such as suffocation, while babies in Africa face threats from infectious diseases such as pneumonia and malaria. But nobody can deny that the United States has both the highest infant mortality rate and the worst parental leave policies of any industrialized nation. The U.S. death rate is 6.1 per 1,000 live births, while Finland’s is just 2.3. Finland, notably, guarantees a year of paid leave and protects a mother’s job, if she takes unpaid leave, for almost three years. “Perhaps this is a coincidence,” says Arijit Nandi, an epidemiologist at McGill University and an author of the PLOS Medicine study. “But maybe not. Maybe we are squandering an opportunity to use social policy to address a serious public health concern. The poorest countries in the world are finding ways to provide benefits to new mothers that we can’t rationalize in the United States.” 

The lack of paid leave for most American families can complicate infant health in a variety of ways. The earlier new mothers return to work, the less choice they have about how long they can breast-feed or whether they can even start in the first place. “If you want to nurse, the first few months are critical to establishing milk flow,” says Martine Hackett, a public health researcher at Hofstra University who previously studied paid leave and maternal health for the New York City Department of Health and Mental Hygiene. “And we know that breast-feeding has a lot of health benefits for both mom and baby,” she notes, including a potential association with reduced infant death.

The limitations of FMLA also place strict constraints on a working woman who experiences complications during pregnancy. Even if she can afford to take the full 12 weeks of unpaid leave, she can only do so once within a 12-month period. If her pregnancy requires weeks of bed rest, that subtracts from the time she can take off after the baby is born. And because FLMA allows employers to require the substitution of an employee’s paid vacation or personal days for FMLA days, workers can be prohibited from stringing together paid and unpaid time into a longer total leave. “I’ve seen parents in so many terrible situations, trying to ration out their leave,” says Carol McMurrich, director of Empty Arms Bereavement Support, a nonprofit organization in Northampton, Massachusetts, that aids area families who have experienced miscarriage, stillbirth, or infant loss. “I think part of the problem is that we live in a culture that expects success when it comes to pregnancy. And we have the American work ethic, which says you have to go every day, work as hard as you can.” McMurrich says the experiences of women in her support groups contrast sharply to those of her friends back home in her native Canada: “The whole attitude toward leave is so different there because they have a year to work with. If you’re having a tough pregnancy, you just stop working at seven months and lie in bed,” she says. “Why would you not? It’s important for the health of the baby.”

Liz Scranton, of Centreville, Virginia, was terrified when she was hospitalized for signs of early labor and put on bed rest at the end of her second trimester in 2012. She was also worried about how to best preserve the four months of paid leave she had carefully saved up over the past several years by cutting short vacations and avoiding sick days. So she decided to continue performing her job as president of a nonprofit from her hospital room. “It was a lot of fun trying to take calls while nurses were finding my veins,” she says. “But I was paid up until the day before my kids were born.” It was a grim victory.

After Scranton spent two weeks in the hospital, doctors decided that her contractions couldn’t be stalled any longer; because of the positions of her twins and the risk of infection, they performed a caesarean section. Her babies were born on July 27, 2012, at just 26 weeks gestation: Chance weighed 2 pounds 8 ounces, and Kenzie weighed just 1 pound 15 ounces. Scranton took off the next two weeks to recover from her C-section while holding vigil over her twins’ isolettes in the neonatal intensive-care unit—and then went back to work. “I know that sounds crazy,” she says. But Scranton and her husband, Donald, a rental car company manager who had just one week of paternity leave, were facing enormous medical bills. “We knew pretty quickly that they would be there for at least three months. The nurses told me, ‘Save your leave. The babies are going to need you when they get home.’ ”

So Scranton took a 50 percent pay cut and went to her office two days a week, then worked from home another half-day for the rest of the twins’ 111-day NICU stay. She had to travel an hour to the hospital but visited every night after work, staying until the NICU’s visiting hours were over. When she couldn’t be there, she called for status updates every two hours throughout the day and again when she woke up to pump breast milk at 2 a.m. It still didn’t feel like enough; Scranton was at work when Kenzie had her first bath and the day a nurse ripped some skin off Chance’s face while changing the tape on his nasal cannula. “Every time something happened, it felt like it took forever to get to them,” she says. “It’s the highest form of mother’s guilt.”

Rachel Thomas, then the manager of an interior design showroom in Washington, D.C., faced a terrible choice after her son, Zachary, was born at 26 weeks gestation on June 20, 2013. She had already used up all of her available maternity leave when she went on bed rest after her water broke just 15 weeks into her pregnancy. Her husband, Chris, had to keep his government job, which provided the family’s health insurance, so it seemed like the only option. She quit.

“Things were just so bad,” Thomas says. “If Zachary died, I knew I wouldn’t be able to handle popping back to work. And if he lived, we knew we were in for a very long haul.” Three years later, she still sometimes wonders why quitting a job she loved felt like the only option. “When I gave my notice, they expressed disappointment, but there was no discussion of how could we make this work,” she says. “I was mentally trying to explore that. Where could I pump in the showroom? It felt impossible.”

Thomas spoke about the babies she saw in the NICU every day who never seemed to have a parent by their isolettes. “They did suffer for it,” Thomas says of the struggling infants near Zachary during his seven-month NICU tenure. “Without a parent there, they cried longer before someone held them.” And she watched the monitors of such babies report blood oxygen levels at 60 and 70 percent of normal for longer than her son’s. “Nobody was there to get the nurses’ attention when the monitors were all going off at once,” Thomas says.

A growing body of research establishes the importance of a parent’s role in the NICU. Premature babies who are held skin-to-skin by their parents have lower heart rates; they also need less pain medication. When parents are there to talk, read, and sing to their babies, they begin vocalizing earlier than other NICU infants. And in one study of 260 families published in the journal Pediatrics, parents who were able to regularly visit the hospital and who were given strategies for coping with the NICU got to take their babies home 3.9 days sooner than comparison families. Considering how much new parents of healthy babies are exhorted to talk to, sing to, and hold their infants to ensure healthy development, it only makes sense the most fragile babies would require the same level of devotion in order to thrive. 

Scranton’s twins are now 3 years old and thriving. But every time she went to work at the nonprofit instead of visiting the hospital, Scranton says, she was gripped by a fearful thought: What if she was saving her leave for no reason? What if her babies were among the 20 percent of micropreemies who never come home? “That [scenario] happens,” says McMurrich. “More often than we want to admit.” 

Once Alison Surratt had cobbled together her eight weeks of leave, she and Ben began scrambling to find child care. They hoped it would only be temporary: Ben would take his CPA exams soon after the baby was born, and once he started his job as an accountant, Alison could quit working for a while. In the meantime, Alison contacted half a dozen local day care centers and was quoted weekly rates of $200 to $350. “I did the math and realized that would leave like $100 in my paycheck,” Alison says. “People kept saying we should file for government assistance, but we were not at the point where I felt like we were candidates for that—in my own head. On paper, sure, we were.” Then about six months into her pregnancy, she went out to lunch with a friend from work who said that her mom would be happy to watch the baby for $25 a day. The woman wasn’t a licensed child care provider, but she was an empty-nester who adored babies, and Alison’s friend said she’d be eager to help out. “I sat there sobbing,” Alison says. “I felt like, seriously, we had just won the lottery. There was nothing that made more sense to me, in that moment.”

An estimated 52 percent of all American infants are in nonparental child care during their first year of life, according to the Urban Institute. They spend an average of 28 hours per week in such arrangements. And although about 3,500 babies in the U.S. die in their sleep each year from SIDS, accidental suffocation, or unknown causes, a disproportionate number of those deaths happen in child care settings, says Alison Jacobson, CEO of First Candle, a nonprofit in Forest Hill, Maryland, that raises awareness and research funds for SIDS and other causes of infant death. “If you look at how many hours infants spend in day care and assume that SIDS occurs equally around the clock, you would expect just 8 percent of SIDS cases to happen when babies are in child care. The actual rate [16.5 percent] is double that.” And approximately one-third of SIDS-related deaths occur in the first week a baby spends in child care, with half of those happening on the first day.

That last statistic stunned Amber Scorah when she read it, months after her son, Karl, died from unknown causes on his first day at a New York City day care on July 13. He was just 15 weeks old. “I thought, ‘How did I not know this?’ ” she says. Scorah considers herself “lucky” because her employer gave her 12 weeks of paid leave, and she was able to patch together a bit more. But she still had hesitations about putting Karl in a stranger’s care so young. “When we laid down all the options on the table, it seemed like [starting day care] was the best option, the most responsible option,” she says. “But I still felt like he was too small. I wondered how much attention they could give him with so many other kids around.” After Karl’s death, Scorah and her partner, Lee Towndrow, launched a campaign to raise awareness about the need for paid family leave, and she wrote two op-eds about her experience. The story quickly went viral. “I’ve gotten so many emails from women telling me their stories,” she says. “The resounding chorus is: This is unnatural.”

Scorah has also encountered critics, who speculate that even if they’d been with their parents, babies like Karl and Leo would have died anyway. Rachel Y. Moon, a professor of pediatrics at the University of Virginia School of Medicine and one of the researchers who discovered the correlation between SIDS and starting day care, acknowledges that it’s often impossible to know. “Most of these deaths are not clear- cut. But I really do believe that babies are stressed out when they start day care,” says Moon. “Any child care provider will tell you, they can walk into the day care and pick out the new baby, because that’s the one who is crying, crying, crying.” Moon hypothesizes that all this stress makes it harder for the baby to fall asleep; when he finally does, he’s so exhausted he may fall into a deeper sleep than usual. “We also know that day care providers are more likely to put babies down on their stomachs, because they stay asleep” better, she says. This raises the risk for asphyxiation in all babies, and for SIDS, in those babies with that genetic predisposition. Both she and Jacobson emphasize that these deaths are often the result of good intentions gone wrong. “Think about how nervous everyone is about a baby coming to day care for the first time,” says Jacobson. “Parents want them to be comfortable, so they may bring more blankets or loveys from home to put in the crib, which can pose a suffocation risk.” Her organization has been a key partner in the American Academy of Pediatrics’ national Back to Sleep and Safe Sleep Saves Lives campaigns, which, by educating parents, caregivers, and medical professionals that infants are safest sleeping on their backs, has helped to reduce the frequency of SIDS by 50 percent since it began in the early 1990s.

Jacobson lost her own baby to SIDS at a day care in 1997, and she is troubled by the persistently high rate of infant deaths in child care. Moon’s research also shows that the kind of child care matters: Of babies who died of SIDS in child care, 21.3 percent were cared for by a relative, 17.7 percent by a licensed day care center, and 54.4 percent by a babysitter or provider caring for children out of their home, often the only affordable situation for low-income families like the Surratts. Moon notes that many providers offering in-home care are unlicensed: “Nobody is giving them any training, they aren’t getting the latest information on public health and child welfare, and there isn’t any documentation either,” she says. “It’s really difficult to reach this population.” But doing so requires a monumental grassroots effort; for almost 20 years, First Candle has been sending volunteers to give presentations at churches and community centers, as well as offering information online. “I would like to see some mechanism where unlicensed day care providers can come together in a safe and effective manner to get this education,” Jacobson says. In the meantime, she sees paid family leave as an important piece of infant death prevention, especially since SIDS rates are highest between 2 months and 6 months, right when most parents must return to work: “The longer mom or dad can stay home with a baby, the better.”

After Leo died, the Surratts spent several months not knowing how they’d ever move forward. They each harbored secret stores of guilt, Alison because she had picked the babysitter, Ben because he’d been the one to drop Leo off that day. “We were eating poorly. We weren’t sleeping. We were drinking ourselves stupid,” Alison says. “Grief doesn’t look like you think it will.” And then, in mid-August, Alison was unexpectedly pregnant again. “We weren’t happy right away. It wasn’t like it was with Leo,” she says. “But now, I think, this is what saved us.”

Their son Philip was born on April 11, 2015. By then, Ben was working full-time as an accountant, and Alison was able to quit her job. She was only offered three months’ leave—unpaid—and neither she nor Ben could imagine ever trusting another child care provider. “I thought, even if we could pay for the most expensive place, like one of those centers with video cameras and you can watch the baby all day, I won’t be able to handle it,” she says.

The Surratts are different parents now. For the first few weeks after they brought Philip home, they traded off sleeping in three-hour shifts so that someone was always awake and watching the baby. He slept in their room, in a co-sleeper suggested by their pediatrician so that they could easily check that he was breathing during the night. Even still, Alison had panic attacks severe enough to necessitate emergency room visits soon after he was born; a year later, they still occur, though less frequently. “I’m still so afraid of Philip falling asleep,” she says. “I think all the time about how he could die.”

-reprinted from Slate 

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