Investigating an infant’s death can prevent future tragedies

In 2020, the number of Stanislaus County infants who died in their sleep doubled compared to the previous five-year average.

Last year, eight infants died in their sleep, with five attributed to sudden infant death syndrome or asphyxia and three babies with the cause listed as “unknown/undetermined,” by the coroner.

The coroner’s reports for all three “undetermined” cases noted unsafe sleeping conditions.

In the past five years in Stanislaus County, an average of 62 children younger than 18 died every year, and four of those deaths were in infants younger than 1 who died in their sleep. In 2020, 71 infants and children died, nine more than the yearly average, and the causes weren’t directly related to COVID-19. One child in the county succumbed to the coronavirus.

Unintentional injuries or accidents, including traffic-related fatalities, are the leading cause of death for children ages 1 to 17.

In addition to a family’s grief, the community suffers the loss of the contributions of a child growing up with a promising and productive future.

With this in mind, the Stanislaus County Health Services Agency looks at the deaths of children as a public health issue and searches for clues to prevent future fatalities.

“Every child death is a tragedy,” said Chelsey Donohoo, an epidemiologist with county public health. “Even just one (that’s preventable) is too many. So, as a community, what can we do to prevent them?”

Donohoo’s job is to review all death certificates and analyze the data to look for high rates, population disparities or other trends.

If she notices that the yearly average for a specific category, such as SIDS, is consistently high or the numbers of deaths surge above the average, those are signals to look closer for the reasons.

Sleep-related infant deaths

“We call them sleep-related deaths in Stanislaus County,” said Julie Falkenstein, public health nurse. “We respond to all sleep-related deaths, not just SIDS. So few are actually SIDS.”

Falkenstein is a nurse manager for Stanislaus County public health and supervisor of the county’s SIDS program, which supports families grieving an infant’s SIDS death and develops public health interventions.

She said unsafe sleeping conditions, such as babies in car seats, with soft bedding, on their stomachs or co-sleeping, are often factors in their deaths. Couch cushions and bed pillows have suffocated infants who don’t have the strength to move their heads.

Infant deaths due to risky sleep environments led Sen. Tammy Duckworth (D-IL) and two colleagues to introduce a bipartisan bill last month to ban the manufacture, importing and sale of crib bumpers in the U.S., because they “pose an unnecessary, deadly risk to sleeping infants.”

There are lots of names for sleep-related deaths: crib death, SIDS and sudden unexplained death. Asphyxia in an infant is also categorized with SIDS at times.

Regardless of what it’s called, it’s an unimaginable heartbreak for the families.

“This is a real tender group,” said Erin Nelson. “An infant’s death can be really isolating, as the parent can feel very alone because the other family members don’t have a relationship with the baby yet.”

Nelson is the executive director of Jessica’s House, a Turlock-based nonprofit that offers support groups for children and families grieving the loss of a loved one, including Heartstrings, which is dedicated to those who have lost an infant during pregnancy or early life.

Nelson said, “Naturally, we blame ourselves as parents” after an infant’s death. Feelings of guilt are normal, and time and someone to listen can help them heal.

Tracking sleep-related infant deaths

In 2008, infant deaths due to SIDS/co-sleeping in the county reached an alarming 13.

Review of individual infant deaths at that time revealed a recurrent theme of unsafe sleeping conditions, including soft bedding, improper positioning and co-sleeping with an adult or older sibling who rolled over and suffocated the baby.

“There were a lot of deaths, so we started going out to the scenes and we were finding all sorts of interesting things going on for sleeping arrangements,” said Kristi Ah You, who was the deputy coroner from 1998 through 2011 and is a former Modesto City Council member.

Ah You said the county has populations with risk factors for SIDS, including those with lower socioeconomic status, language barriers, maternal drug use and lower educational attainment.

The reviews of the 2008 deaths and the coroner’s investigations prompted a public health education campaign for safe sleeping for infants, using videos for parents of newborns and modeling of safe sleep practices by nursing staff in hospital delivery wards.

Doctors Medical Center has continued these efforts, with education starting in childbirth classes.

“I’m always blessed by how grateful our parents are to learn ways to protect their little ones,” said Nell DeVries, postpartum nurse at DMC.

Kaiser has its own safe sleeping campaign and video online.

“Our labor and delivery care teams are dedicated to helping new parents understand safe sleep practices,” said Dr. Marcial Salvador, director of the newborn nursery at Kaiser Modesto, in an email. “Parents have access to the Newborn Channel, which has videos on safe sleep, and we use “Safe Sleep” (campaign) resources.”

Memorial Medical Center did not respond to requests about its education programs.

When is it SIDS?

Nationwide every year, about 3,500 infants die with SIDS coded as the cause. That’s about a 50% decrease in 2018 compared to 1998, the early days of a national “back to sleep” program, which evolved into the safe sleeping campaign. It encouraged parents to place an infant alone on its back in a crib for sleeping.

Some states, such as New Jersey, have launched a “baby box” program, distributing boxes that serve as cribs for newborns and encourage safe sleeping practices.

In Stanislaus County, the decline is nearly 70% from 13 deaths in 2008 to four each year, which was stable through 2019, but doubled in 2020,

SIDS affects infants younger than 1, most before 4 months, and is more common among Black and Native American babies, those who are born to mothers who smoke or use drugs and are young or low-income. But it can happen to any infant.

It is considered a “diagnosis of exclusion,” meaning a thorough investigation for a cause was unrevealing. Cardiac arrhythmias, low blood sugar, infections, abuse and many other possible causes have all been implicated. Without a clear cause, finding preventive measures is difficult.

Dr. Eugene Carpenter, a forensic pathologist, said unless there are signs of trauma, autopsy findings do not help distinguish between accidental or intentional suffocation.

Carpenter was a part-time, contract medical examiner for Stanislaus County from 2009 through 2020. The forensic pathologist, also called a medical examiner, performs the autopsy looking for the causes of death including bruises, fractures and other signs of abuse.

Ah You said if an infant dies at home, law enforcement usually investigates the scene, such as collecting bedding, checking the environment, any evidence of parental drug use, talking to all household members and looking for clues about the infant’s safety before death.

In Stanislaus County, the coroner is the sheriff, which is an elected position. In consultation with the forensic pathologist, the coroner or his deputies assign the manner of the death as natural, accidental, homicide or unknown/undetermined.

Ah You said, “If a child is placed in unsafe sleeping and is found dead, it’s not ‘natural,’ but it’s also not a homicide, as there’s no intention. It’s an accident. If the child is in a completely safe environment and they pass away, then that’s a SIDS death.”

One action that public health uses to understand causes of child deaths, including SIDS, is a review of the fatalities by the Child Death Review Team.

Child Death Review Team

The Stanislaus County child death review team includes representatives from organizations that could touch a child’s life, including county agencies such as public health, child protective services, behavioral health, among others, law enforcement, the district attorney’s office and private, social services agency, such as Haven’s Women’s Center.

The team reviews selected fatal cases with the goal of understanding how and why the child died, including looking for systems failures. For example, if the family of a deceased child had previous involvement with child protection services or law enforcement, that may signal a break in the system.

“This will ultimately protect our children and our parents from the trauma of losing a child,” said Falkenstein, who is also the coordinator of the review team.

During the pandemic, her duties have been shifted primarily to COVID-19 and the full review team has not met in more than one year.

But after The Bee reviewed death records and asked about the increase in infant deaths, Falkenstein said the county would be looking into the cause.

“Thank you for bringing this to our attention and notifying us of this trend prior to the death certificates being finalized,” Falkenstein wrote in an email. “We will look into having a specific DRT meeting related to infant sleep related deaths.”

Dr. Carol Berkowitz, international child abuse expert and member of the CDRT in Los Angeles County, quoted Dr. Lakshmanan Sathyavagiswaran, now retired Los Angeles County forensic pathologist, as saying, “I speak for the dead because they cannot speak for themselves.”

“We have to think of unsafe sleeping conditions as a public health issue,” said Berkowitz, “Our role with child death review is prevention, using a systems-based approach.”

Child deaths 2015 to 2019 and early data from 2020

With COVID-19, 2020 was a grueling year, but the coronavirus wasn’t the primary burden for children.

The top seven categories accounted for 352 of the 379 deaths from 2015 through 2020. Categories with fewer than 10 deaths, including SIDS and abuse, are not ranked. It generally takes a year to finalize vital records statistics, so the 2020 data are preliminary.

“Our leading cause of death is congenital malformation, that is deaths related to birth defects, or something during the perinatal period,” said Donohoo.

From 2015 through 2020, this category accounted for 176 deaths primarily among infants, 1 and younger. This is also the leading cause of infant deaths in the United States.

Donohoo said, “Year by year, we’re performing not as well as California but better than the U.S.” for the number of children dying.

Data from the state and U.S. are only available through 2019. Stanislaus County has much higher rates per 100,000 children than California for the categories of “all,” congenital malformations/perinatal deaths and accidents.

The estimated rates for “all causes’‘ per 100,000 youth for nearby counties of Fresno, Merced and Sacramento were similar to Stanislaus County’s rate.

Unintentional injuries/accidents is the leading cause of death in children age 1 and older in California and the U.S, as well as in the county.

The county rate of 11.2 per 100,000 children for accidental deaths was more than 40% higher than the state’s rate of 4.6. Transportation events, predominantly motor vehicle crashes, accounted for most of these.

With COVID-19, a shift of public health resources to fight the pandemic was unavoidable. But, public health agencies nationwide have had their funding slashed for decades, leaving them to operate on skeleton crews, according to a report from Kaiser Health News. Stanislaus County Health Services Agency is not immune to the cuts in funding, losing about 40 positions in the budget from 2018-19 to 2019-20.

“I would think that something this important would be an essential task within our community,” said Ah You. “Public health is the last to get the resources that they need. It’s not right …our public health department needs to be state of the art for our community to remain healthy. I think we’ve realized this with the pandemic.”

This story was produced with financial support from The Stanislaus County Office of Education and the Stanislaus Community Foundation, along with the GroundTruth Project’s Report for America initiative. The Modesto Bee maintains full editorial control of this work. To help fund The Bee’s children’s health and economic development reporters with Report for America, go to bitly.com/ModbeeRFA.