MEDFORD, Mass. — The parents were allowed to hold their baby until the medical examiner’s van arrived. Then, they’d have to hand his body over. So Holly and Eric High did what they could to say goodbye. They huddled in an alcove of the emergency room, cradling James in their arms, kissing him, rubbing his hair. They wished the police officer would stop questioning them. They knew she was trying to be gentle. But now, in these last moments with their son, it couldn’t help feeling like an interrogation.

There had been no warning. As usual, James had woken before dawn on Sept. 29, 2015. He didn’t cry when he stirred; instead, he made this babbling sound, almost bird-like, more curious than upset. Holly scooped him from his bassinet to breastfeed. Four days earlier, his pediatrician had declared him “perfectly healthy,” and in the gathering light, he looked it, wide-eyed and fat-cheeked at 4 months old.

Summer was slipping into fall, the Highs settling into a new routine. That week, Ellie, their 2-year-old, had started ballet. The month before, James had joined her at a home day care run by a neighbor, who’d quickly become their kids’ honorary third grandmother, soothing them through milestones, nudging Ellie from bottle to sippy cup. “She taught us how to be parents,” Eric often said.

They dropped the kids off with her around 8 a.m., Ellie running in to play with her friends. James’ eyes crinkled closed when he smiled.

For years afterward, their bodies would remember the time of day when it happened: Whenever Holly was sitting at her desk and felt a blinding rise in panic, she knew it was around 1:30 in the afternoon. The police reached Eric first, calling and calling until he stepped out of the chemistry lab he was teaching at Tufts University. James was being taken to Lawrence Memorial Hospital. They wouldn’t tell Eric what was wrong.

It was Holly who called the day care from her actuarial office in downtown Boston, who heard their neighbor coming apart on the phone. James never woke from his nap, she said. When she checked on him, his skin was blue.

James was no longer James by the time they got to the hospital. He was tiny in the middle of a full-sized bed. The team had been working on him for a while — jolting him with epinephrine, coaxing his lungs to breathe — and had gotten no response, they told Eric when he arrived. They wanted to know when they should stop.

“I need you to keep working on him until my wife gets here,” he remembered saying. He held James’ hand while the doctors tried to bring him back to life.

Holly collapsed as soon as she walked in. “I just want to hold him,” she said again and again.

He was declared dead at 2:34 p.m. Someone remembered the mementoes that hospitals collect for the family when a baby is stillborn. They pressed the soles of James’ feet into ink and made prints, right and left, slid them into a frame frilled with white lace. They cut a lock of his hair.

Then, they swaddled him, pulled on a newborn’s hat, and handed him back to his parents to hold under the supervision of a Medford detective. A state trooper stood nearby. The Highs, both then 30, were grateful the police had called their family members and arranged for Ellie to go to a friend’s house. Now they wanted the officers to go away. They answered questions in a daze. No, they had no concerns about the day care provider. James had been a bit fussier than usual, but it was just a growth spurt. He’d been drinking mostly breast milk with a small supplement of formula — Similac, the blue can. No, he’d had no fevers. Yes, he always slept on his back.

When the time came, Eric refused to pass James to a stranger. He was allowed to carry the body to the edge of the premises himself, down a long hallway toward the loading dock. The medical examiner’s employee was waiting.

“She was like, ‘We’ll take good care of him, don’t worry,’” Eric remembered. “Then I handed him to her because I had to.”

He walked back to Holly, and recalls being told, “OK, you guys can go home.” Eric laughs quietly at the memory of it. In retrospect, the wording probably wasn’t that callous, but that’s how it felt right then: Once Eric and Holly had answered questions and given up their infant, officials had no use for them. The Highs were left wondering whether they’d somehow done something wrong.

“I don’t think I can drive,” Eric replied.

James High
Holly holds prints of James’ feet and a lock of his hair.

It’s hard to imagine anything that could deepen the grief of losing a child. Parents who’ve experienced it echo King David: You wish you could have died instead. The tiniest actions — controlling a car, even climbing out of bed — seem insurmountable. You fill out forms, make funeral arrangements through a fog.

When an infant unexpectedly stops breathing during sleep, the usual bureaucracy of death is multiplied, the paperwork thickened with accusation. Investigations are triggered with the local police, the state police, the agency that checks for child abuse. In some jurisdictions, officials appear soon afterward, asking parents to re-enact what happened, a doll standing in for their baby. The medical examiner or coroner takes the body, to determine a cause of death, looking for hints of “foul play.”

These protocols are designed to protect. Often they do. But how an officer or medical examiner carries them out can sharpen the suspicion inherent in any investigation, heightening parents’ self-blame even when there’s no evidence of wrongdoing. As director of a Boston Children’s Hospital program that studies unexpected child deaths, Dr. Richard Goldstein hears such stories all the time. An officer tells parents their house is a crime scene; a state employee says no, you can’t hold your baby, we’re putting him into a body bag.

Goldstein knows such lapses in compassion are partially born of confusion. It’s lurked on death certificates for ages, but took a new, more visible turn in the 1980s, with growing evidence that “cot deaths” were rarer when infants slept on their backs. The news traveled through Australian studies and European advisories, eventually bursting out of American radios and TVs in 1994, with a public health campaign called “Back to Sleep.”

The rate of “sudden infant death syndrome” plummeted — and kindled that old nemesis of statisticians everywhere, the conflation of risk factor and cause. Americans mistakenly thought that belly sleeping, which can increase a baby’s likelihood of dying, was the clear-cut reason someone’s infant died.

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Add in a 1997 true-crime thriller about infanticide — “The Death of Innocents” — and it’s an easy jump to the myth that every unexplained infant death is either carelessness or abuse. “People think SIDS is no longer a problem … but it hasn’t gone away,” said Dr. Rachel Moon, who chairs an American Academy of Pediatrics task force on safe sleep.

The decline was real at first — a triumph attributed largely to “Back to Sleep,” but also to upticks in breastfeeding and prenatal care alongside decreases in teen pregnancy and maternal smoking. Then, toward 2000, the downward slope of SIDS began to coincide with increases in other, similar causes of death. What looked like fewer babies dying, the evidence suggested, was now a trend of tragedies being given other names.

The boundaries are still blurred, two decades later. It’s partially a problem of definitions. Doctors coined the term SIDS in 1969, hoping to reduce stigma, but, as Goldstein explained, “it’s sort of an anti-category” — a clustering of infant deaths for which no explanation can be found. That leaves a lot of gray. And the United States is a patchwork of postmortem practices. What Dr. Sally Aiken, medical examiner of Spokane County, Wash., calls “sudden unexpected death in infancy,” her counterpart elsewhere might designate “cause unknown” or “accidental suffocation and strangulation in bed.” Because such ways of dying seldom leave distinctive markings on a body, much depends on observations at the scene. Aiken knows that across some state or county lines, risk factors get listed as causes. “It certainly does skew statistics,” she said.

A look at how sudden infant death syndrome (SIDS) numbers have changed since 1990.

Lumped together, these categories form one of the leading causes of infant mortality in the U.S., after complications of birth and congenital defects: There were 3,600 cases in 2017.

To Carrie Shapiro-Mendoza, an epidemiologist at the Centers for Disease Control and Prevention, there’s a pressing need to standardize the way these deaths are investigated and classified. The current system “leads to unreliable statistics … and impedes prevention efforts,” she said.

The experts all agree: Babies should sleep on their backs, alone, with no soft bedding. That isn’t a cure-all, though. “The predominant messages are, ‘This problem’s solved, you put your baby on their back and nobody dies from SIDS,’” Goldstein said. “But look at James High. No risk factors.”

Even when there are risk factors in a baby’s sleep environment, Goldstein pointed out, there’s usually more to the story. Yet research that might yield a fuller explanation is often dismissed. In 2008, the National Institutes of Health provided $29 million for the study of unexpected infant deaths. By 2017, the figure had withered to $13 million. When discussing his own work on the subject, Goldstein said, he’s heard hospital higher-ups respond, “Oh, I thought that was just people smothering their kids.”

Such thinking has a profound effect on parents. It’s sickening enough to know your baby died and science may have no explanation. It’s worse to wait months — or years — for an autopsy report, worrying the death is somehow your fault. It’s worse, still, to hear from the Massachusetts medical examiner’s office that your infant is “not a priority” and that you should not call again.

Holly and Eric High
Holly and Eric at home in Salem, Mass.
Holly High
Holly holds James’ swaddling blanket, which they keep in a chest of his belongings.

The police had to drive them home. Once there, though, the Highs couldn’t face a house all set up for James. They began to walk, their minds a blur, ending up at the day care. The police were gone now, bedding and bottles taken as evidence. They cried with the owner, told her it wasn’t her fault.

There was no one to do that for them. The next morning, investigators from two child welfare agencies showed up, unannounced. The next week, the Highs got a bill for James’ trip to the emergency room: $1,365 for the attempted resuscitation, $2.87 for the bag of dextrose and water to keep him hydrated and fed. The hospital’s financial department called, asking if they intended to pay.

The medical examiner’s office was supposed to refer parents like the Highs to the Massachusetts Center for Unexpected Infant and Child Death, for free grief support. Parents’ isolation can be intense, explained Shari King, who directs that program. Friends become afraid to say the baby’s name. Some parents, consumed with loss, see their child’s face in the features of strangers. “People need to know they aren’t crazy,” King said.

But the Highs heard nothing. Holly ached everywhere; all she wanted to do was sleep, clutching a piece of James’ clothing like a talisman. Her mother tried to coax her to eat. Everything was a reminder of his absence. She and Eric saw babies everywhere. They discarded the clothes they’d been wearing that day.

Holly had loved nursing James, the intimacy of it. Now, she and Eric sat together crying as she pumped, only to throw her milk away. “I was really mad at my body for not knowing to stop,” she said.

They had a memorial service to arrange, but knew nothing about what was happening with James’ physical remains. “They didn’t even tell us that his body was ready to be picked up by a funeral home,” remembered Eric. So, after mustering courage for a few days, he called the medical examiner’s office. The conversation made him hope he never had to phone again: “It was very gruff and matter-of-fact, like, ‘His body is waiting.’”

Holly and Eric had many more questions — all pressing, all seemingly unanswerable. Some they dealt with as best they could. To help explain what death is to their 2-year-old, they adapted a classic book on losing a sibling — “Where’s Jess?” — and read it to Ellie. She was the reason they kept getting up in the morning. When she woke in the middle of the night, wanting to talk to James, they closed their eyes and sat with her as she told her brother about her day.

Other questions lingered. While Holly was pregnant with Ellie, a bright patch had appeared in her 20-week scan: a growth on the baby’s lung. “The best you can hope for is that she outgrows it,” they remembered the surgeon saying. “But if it outgrows her, then you’re not going to have a baby.” Even once she was born healthy, they were on tenterhooks, knowing she would need surgery in a year. When the procedure finally arrived, Eric forbade his mother from snapping pictures: No matter how adorable Ellie was in her hospital gown, this was a day they wanted to forget. Now, they couldn’t stop wondering if James’ death was somehow related.

On that day, the state trooper had mentioned that the toxicology report would take around six weeks. But the date came and went. They heard nothing. Was there something they’d missed? Their worries filled the medical examiner’s silence. “Are we not hearing back from the ME’s office because there is something about his case that is making them …” Eric paused, as if he couldn’t even contemplate the thought. “Is there something suspicious we don’t know?”

Often, everyday interactions didn’t help. After the Highs’ neighbor decided to retire, they told the director of a new day care that they had a son who died as an infant; she responded: “What was in the crib?” They tried to give away their baby equipment, Eric said, “but nobody would take it.”

“Even the car seat,” added Holly. “Nobody wanted that.”

“They feel like your kid is tainted. Or cursed.”

“They feel like the same thing is going to happen to their kid.”

James High
A photo of James at 4 months old and the urn containing his ashes (left) on the Highs’ bureau.

It was the accusation that struck Goldstein when he first witnessed the aftermath of SIDS. He was about 22, still years away from being a physician. His interest in the body had arisen only because his own was under attack. As a philosophy and ethnomusicology student at Wesleyan University, he’d spent a few months in south India, learning a lute-like instrument called the veena and unknowingly cultivating within his gut a wriggling mass of parasites.

Standing in the throng outside a government clinic with a cup of his own diarrhea changed him. He saw just how much politics could scar the body. “Most of us were in line for something you could treat — or prevent with just good water — and they were all wrecked,” he said.

To get a taste for medicine, he volunteered at an emergency room in his hometown of Vineland, N.J. “One morning, they brought in … I didn’t know what they brought in; it’s so unusual for an ambulance to pull up with no sirens and no lights,” he said. It was a bundle about the size of a shoebox, a tiny wrapped thing in the middle of a stretcher. The parents followed after, shadowed by a policeman. They looked utterly crushed, but the officer didn’t have the solicitous air of someone providing support; instead, he loomed, hand by his holster, walkie-talkie crackling. When the doctor unwrapped the child, a fly that had been trapped in the blankets buzzed out and up toward the mother’s face. She started to swat it, but then stopped, her hand in midair, as if, Goldstein said, she were suddenly afraid.

Over three decades later — after Harvard Medical School, after work in pediatric palliative care — those scenes in India and New Jersey continue to shape Goldstein’s work. He still has something of the philosophy student about him, a kind of contrarian twinkle. But rather than Marx and Hegel, his arguments now focus on how the bureaucratic and the biological intersect. He’s so obsessed, he needs a reminder, taped to the corner of his computer: “Food for thought is no substitute for the real thing.”

To him, giving parents as rigorous answers as possible about their infant’s death is the best avenue to healthy grief. So, in 2012, he co-founded Robert’s Program at Boston Children’s. It offers both bereavement support and inclusion in research studies, for free. (Goldstein turns down cases in which there’s any suspicion of abuse, and refuses requests to be a paid expert witness.)

His team sifts through neurons and genomes, looking for patterns that might help explain these deaths, publishing findings in statistic-studded papers, but also giving parents a personalized report about their child — providing them the kind of science that cash-strapped state labs often can’t.

Dr. Richard Goldstein
Dr. Richard Goldstein in his office at Boston Children’s Hospital.

The Highs found Goldstein the way they found most support services: Holly searching online late at night, sending emails, one person leading to the next — a grief-stricken scavenger hunt. Among these hints and clues, Robert’s Program represented something new: Someone besides the medical examiner who might explain what happened.

By their intake appointment in January 2016, three and a half months after James’ death, they still weren’t leaving the house for anything besides absolute necessities. They drove in silence, readying themselves to relive the trauma of that day. Goldstein led them into a small exam room.

His focus, he explained, was the oft-neglected contribution of underlying biological abnormalities: metabolic disorders, cardiac disruptions, brain malformations that might rob infants of certain lifesaving reflexes if the baby’s airway were obstructed. That’s what his team would be looking for.

But the program also offered another boon: the relationship Goldstein spent years forging with the Massachusetts medical examiner’s office. The agency provided tissue samples for Goldstein’s research. His program deepened the official search for a cause of death. They jointly explained their findings to the family in person at the end.

That was part of the allure for the Highs. They signed consent forms, sketched family trees, gave blood. They answered Goldstein’s questions in the hope that it would help him answer their own: Should they worry about Ellie? Would having another baby mean this would happen again? They needed some kind of an explanation, and had heard nothing from the fortress-like agency that had taken their kid.

High family drawing
Ellie’s drawing of her family hangs above her and Warren’s bunk bed. From left, Mom, James, Penny (the dog), Warren, Dad, and Ellie.

Wedged between hospitals and highways, the Massachusetts Office of the Chief Medical Examiner is a squat construction of redbrick and gray, its concrete crumbling at the corners. Outside, ambulance drivers take cigarette breaks as traffic whispers on and off I-93.

Inside, the place has been troubled for years: short-staffed, underfunded, backlogged, overwhelmed by the bodies of the opioid crisis. When the last chief retired, the agency was not meeting the national target of finishing 90 percent of autopsy reports within 90 days of examining the cadaver.

Then, in October 2017, Dr. Mindy Hull took over the job. By August 2018, she’d met that goal — but not for infants, whose cases tend to be more complex. Sixteen of the 56 baby investigations from 2017 and 23 of the 57 from 2018 were still pending this month, said spokesman Felix Browne.

What bereaved parents noticed about Hull’s tenure, besides the wait, was the slashing of support services. When the two licensed social workers employed as family liaisons left, Hull didn’t replace them. Instead, in a January 2018 email to employees, chief of staff Lisa Riccobene said she would handle any “family that is difficult to reason with” — a duty she kept after the Boston Globe revealed, months later, that she’d falsely claimed to have a psychology degree.

Hull’s staff stopped meeting with Robert’s Program families and Goldstein. Her office also stopped automatically making referrals to the Center for Unexpected Infant and Child Death; the center’s grief counseling caseload plummeted from 30 or 35 families a year to under 20.

Cutting off these referrals, Goldstein worries, will exacerbate a problem that’s already apparent. Sudden unexpected infant deaths are significantly more common in poor, Native American, and black families, but those groups are less likely to get support services.

The office does not consider such programs essential, Browne said, and needs fewer liaisons because wait times have decreased overall (though the agency’s pace is now behind the national standard again, the Globe reported this month). The agency, he added, is hiring more doctors and “remains focused on its mission to deliver timely information to citizens of the Commonwealth.”

Parents like the Highs didn’t stop needing support, though. All five Massachusetts families interviewed for this article described being stuck in limbo during the 10 months or more they spent waiting for news from the medical examiner. One mother said she was told to stop calling; another was told the documents would come whenever they were ready. Meanwhile, these parents were terrified their other children would stop breathing, too. Again and again, they’d touch their kids’ chests at night, to double-check.

“It’s infuriating,” said Rebecca Smerling of Lexington, who is still waiting, 13 months after the death of her 5-week-old, Drew.

Jodi Bissonnette of Dedham, who lost 2-month-old Thomas in 2018, spent a year worrying the culprit was some contaminant in her breast milk or her house. “I don’t want someone touching my son and not giving me answers,” she said. “It tears you apart, every night, every day, every hour: ‘What could I have done differently?’”

After losing 28-day-old Ambrose in 2016, Maggie Moran Mancuso of Dorchester said she spent nearly three years calling the medical examiner’s office and being told, “Your baby’s not a priority.” Finally, this past January, a kindly employee suggested she might have more success getting an autopsy report if she put political pressure on the office. She wrote to her state representative; within a few days, Ambrose’s case was closed. “It’s almost like you’re in purgatory,” said Mancuso, who founded a support group called Ambrose’s Angels. “The amount of pain they add to each family — they have no clue … how much more torture it was than it had to be.”

Mancuso added that Riccobene called her, irate, demanding to know who suggested she go public. Six current or former employees confirmed they’ve heard Riccobene speak this way over the phone. They all described being horrified at how office representatives treat families and others. Fearing retaliation, they asked not to be identified.

“The office does not believe it is appropriate to comment on private conversations between staff members and grieving families,” Browne said, adding that corrective action is taken if an employee is found to be unprofessional. When reached by phone, Riccobene said, “Do you believe everything these families tell you?” She asked if she could call back. Browne then emailed to say she had no further comment.

Medical examiners inspire anger elsewhere, too: Being the face of the state at a parent’s worst moment is, to put it mildly, delicate work. But like diagnoses, attitudes change from person to person, office to office. At a recent SIDS conference, Dr. Mary Ann Sens, who oversees postmortem exams for around 30 counties in North Dakota and Minnesota, explained her method to a group of researchers. She likes to speak to the parents three times, she said, once before and twice after the autopsy. She wants to know what the child was like, how the parents’ religious beliefs influence their understanding of death. She explains how risk factors are different from causes, answers their questions.

“It just breaks my heart, sometimes they ask, ‘Will you keep the lights on? They’re afraid of the dark,’” she said. “And I tell them I’ll keep the lights on in the morgue.”

High family
A photo of Ellie, Holly, Eric, and James in the entryway of the Highs’ home. James is about 3 1/2 months old in the photo, taken on a merry-go-round at a Pennsylvania amusement park.

Holly didn’t know whether she could get pregnant again. Her grief for James was so physical, she wondered if her body had been primed for loss. A miscarriage, in January 2016, came with a grim sense of confirmation.

So she wasn’t sure whether to believe it when, one month after that, she slipped out of work at lunch hour to buy a pregnancy test, and it was positive again. The excitement she shared with Eric wasn’t what it had been for Ellie and James. They didn’t buy any baby stuff, didn’t bat around names. They knew how much could go wrong; every milestone was tinged with the terror of waiting. “I remember thinking … ‘I’m just going to lose all my babies,’” she said.

That was why, when Goldstein wrote to say he’d heard from the medical examiner and she was free for a meeting on July 14, 2016, Holly decided not to go. “I didn’t want to put my pregnant self into that situation,” she said. “Anything that implied that I did something, missed something with James — I just couldn’t.”

Eric figured he’d be overwhelmed, though, and wanted witnesses he could trust. So he asked their kids’ pediatrician, as well as his older brother Heath, an intensive care physician in North Carolina. “The medical examiner … had become this faceless monster,” Eric explained.

That morning, his fingers couldn’t keep still, tapping and twisting and fiddling as he and Heath drove downtown. Even the waiting room was behind a locked door. Goldstein met them there, and led them to a conference room upstairs. “That building where his body was,” Eric said, “it was the last place I wanted to be, but I wouldn’t be anywhere else.”

It was almost hard to believe when Dr. Faryl Sandler, the medical examiner in charge of James’ case, sat down at the table. Here she was, this doctor whose work had consumed every corner of their thoughts. Eric steeled himself.

But before she opened her files, Sandler said she was deeply sorry for his loss. It didn’t put Eric at ease, exactly — nothing, at the moment, in that building, could put him at ease — but he’d needed to hear it, an acknowledgement from the medical examiner that James was a person with a family who deserved care. Suddenly, Sandler became a person for him, too.

Then, she moved through the autopsy report. He remembered her telling him that everything in James’ sleep environment seems to have been safe, that he was a perfectly healthy, normal baby. The manner of death was “natural.”

As unsatisfying as that answer was, Eric was relieved. James was a classic SIDS case. At least they had a name for what happened.

Then it was Goldstein’s turn. His team had found, in James’ brain, mild malformations of the hippocampus, which they’d observed in other babies who’d died suddenly and unexpectedly. Layers of cells that should have been stitched together were pulling apart. Coils of tissue that should have looked the same in both hemispheres of the brain showed asymmetries.

The most common of these anomalies — found, according to Goldstein’s research, in 41 percent of infants who’d died without explanation but only 8 percent of those with a clear cause of death — was also a classic sign of temporal lobe epilepsy. Goldstein couldn’t say whether James had died with or from the miswiring in his brain. The science wasn’t strong enough yet. He could offer only correlation, not causation, a hypothesis that James may have had a seizure.

They’d also detected a genetic mutation in both Eric and James, potentially linked to electrical signals in the nervous system and —

That’s when Eric lost it.

He doesn’t cry easily. He’s more likely to let out a sad, disbelieving laugh. But now his eyes welled up, his voice caught in his throat. All he could think was: “It’s my fault.”

Everyone in the conference room tried to reassure him. Only Holly could. Later that afternoon, as they wandered through their neighborhood by the Mystic River, she was firm: It wasn’t Eric’s fault. It wasn’t anybody’s fault. It just happened.

The genetic variant proved, with more research, to be harmless, and Warren James High was born healthy on Nov. 7, 2016.

The autopsy report finally arrived at the Highs’ in February 2018, more than 18 months after the meeting with the medical examiner, two and a half years after James’ death — so long that Eric had figured the summary was never coming, and had stopped rushing home before Holly so she wouldn’t have to find it in their daily scattering of mail. She opened the thick envelope and got halfway through the first paragraph before realizing that its clinical details made her feel sick.

Eric hid the report in a drawer at work. “It’s not something I ever want to read,” he said. “It’s about just getting an official document that they’re done, so we can put it in a box, and know that XYZ investigations are finished.”

High family
Holly, Ellie, and Eric on an unseasonably warm December afternoon at a playground near their home in Salem.
High Family
The High family walk across Salem Common on Holly and Eric’s ninth wedding anniversary in December.
Eric and Warren High
Warren and Eric at the playground.

The hardest times are the happiest times, those moments when you feel good but also guilty for feeling good, as if even an instant of unequivocal joy without James is not allowed. Tonight is one of those times. It’s a Friday evening in December, the Highs’ new apartment in Salem filled with the everyday release once school and work are done. The kids come tearing in and they’re everywhere at once, wriggling out of their coats, hugging their dad around the legs, shrieking through every room in the house.

Holly follows after them carrying a sheaf of Ellie’s artwork, a portrait of a pumpkin in thick brushstrokes visible beneath her hand. She yawns, still wearing her coat, as she picks the kids’ jackets up from the living room floor and carries them to the two hooks by the entrance, under the framed portraits of their three kids.

Eric had procrastinated about putting up those hooks. The task, simple as it was, was a reminder that they only had two jackets, two schoolbags to hang up. In the same way, he and Holly hesitate when someone asks how many children they have. They don’t always want to reveal something so painful, so personal — at a work conference, or in the elevator — but James is one of their kids. Sometimes, they use Goldstein’s findings, telling people their son had a brainstem abnormality and died, so they don’t have to get The Look that comes when they talk about SIDS.

Now Warren is on the kitchen floor doing his 2-year-old approximation of his big sister’s cartwheels, a kind of wiggle-somersault. Ellie is making a fort among the pillows of her parents’ bed.

Each of these evenings is at once routine and unique, structured by parents, colored by the idiosyncrasies of little kids. Sometimes they go to the playground in the last of the winter light, racing each other across the frost-hardened grass. Sometimes Warren says no to every food in the fridge except cake, and his parents tell him that he can’t just eat cake. Sometimes Ellie makes slime, kneading dye in until it becomes the right hue. Sometimes, they have get-your-energy-out dance parties, Warren toddling circles around Ellie as she twirls and spins.

Sometimes, once she’s all danced out, instead of asking for “Don’t Let the Pigeon Drive the Bus!”, Ellie wants to hear James’ book. So Eric pulls it from the shelf, cuddles up with her and Warren on their bunk bed, holds the pages wide, and begins to read: “I asked Mommy and Daddy, ‘Where’s James?’ They told me James is dead. I wanted to know what dead is. ‘Is dead like sleeping?’ Mommy said dead was not like sleeping.”

  • …annual mortality rates of SUDEP in infants and children are considered unreliable but are suspected to be at least comparable to adults (1000 pt- years 6.0-9.3 (Ref.: Manganaro et al, The Need for Antiepileptic Drug Chronotherapy to Treat Selected Childhood Epilepsy Syndromes…Jour. of Central Nervous System Dis., 2017)

  • The decrease in the SIDS rate after the “back to sleep” campaign was not a true decrease. The diagnostic criteria was changed so that what was previously called SIDS was then called something else. This is explained in PMID: 21543527 “Infant mortality rates regressed against number of vaccine doses routinely given: Is there a biochemical or synergistic toxicity?”
    Excerpt: “In 1992, to address the unacceptable SIDS rate, the American Academy of Pediatrics initiated a ‘Back to Sleep’ campaign, convincing parents to place their infants supine, rather than prone, during sleep. From 1992 to 2001, the postneonatal SIDS rate dropped by an average annual rate of 8.6%. However, other causes of sudden unexpected infant death (SUID) increased. For example, the postneonatal mortality rate from ‘suffocation in bed’ (ICD-9 code E913.0) increased during this same period at an average annual rate of 11.2%. The postneonatal mortality rate from ‘suffocation-other’ (ICD-9 code E913.1-E913.9), ‘unknown and unspecified causes’ (ICD-9 code 799.9), and due to ‘intent unknown’ in the External Causes of Injury section (ICD-9 code E980-E989), all increased during this period as well.18 (In Australia, Mitchell et al. observed that when the SIDS rate decreased, deaths attributed to asphyxia increased.19 Overpeck et al. and others, reported similar observations.)20,21

    A closer inspection of the more recent period from 1999 to 2001 reveals that the US postneonatal SIDS rate continued to decline, but there was no significant change in the total postneonatal mortality rate. During this period, the number of deaths attributed to ‘suffocation in bed’ and ‘unknown causes,’ increased significantly. According to Malloy and MacDorman, “If death-certifier preference has shifted such that previously classified SIDS deaths are now classified as ‘suffocation,’ the inclusion of these suffocation deaths and unknown or unspecified deaths with SIDS deaths then accounts for about 90 percent of the decline in the SIDS rate observed between 1999 and 2001 and results in a non-significant decline in SIDS”18 (Figure 3).”
    Earlier in that section, the authors state: “Prior to contemporary vaccination programs, ‘Crib death’ was so infrequent that it was not mentioned in infant mortality statistics.”

    • From the second paragraph:
      Four days earlier, his pediatrician had declared him “perfectly healthy,”

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