In the News

Sudden infant death syndrome, suffocation, abusive head trauma from being shaken, unexplained sudden death… There are a number of tragic ways an infant can unexpectedly die, leaving parents confused and heartbroken with grief. While nothing can take away that pain, many parents want answers more than anything else: Why did their baby die? Could it have been prevented?

 

The first step to getting those answers is data: Thorough investigations and autopsies conducted in a standardized way enables comparisons across populations, the identification of risk factors and, hopefully, identification of preventive factors or prevention strategies. The problem is, no nationwide set of standards for these investigations exists. A new bill proposed by U.S. Representative Gwen Moore Feb. 12 aims to help rectify that. The Wisconsin congresswoman introduced the Reducing Unexpected Deaths in Infants and Children Act, a $21 million initiative aimed at increasing support to states, municipalities and organizations to address the investigative, preventive and support needs associated with infant deaths.

 

“Sadly, grieving parents and family members are often left without answers regarding the cause of death of their infant or child,” Moore said in a letter seeking support from colleagues. The lack of nationwide standards “leads to inadequate, inconsistent and incomplete information in many of these cases,” which stymies efforts to stop them from happening.

 

While each individual family’s risk of experiencing such a death is low, the numbers are substantial at a population level: An estimated 3,500 infants die from sudden unexpected infant deaths (SUIDs) each year, including 1,500 from SIDS, out of about 4 million annual births. Another 24,000 stillbirths occur each year, and 80 children die from abusive head trauma. The U.S. infant mortality rate lags significantly behind other high-income countries, with 6 out of every 1,000 babies failing to reach their first birthday. The rate is even higher for black infants—11.5 per 1,000—and the overall rate in Moore’s city of Milwaukee, 10.6 per 1,000, is similarly well above the national average.

 

But breaking these statistics down further into different categories across different states and cities is tough because of inconsistent and inadequate data collection.

 

“Given the lack of national reporting standards, it is unclear how reliably comparisons between states can be made,” said Christopher Greeley, MD, chief of public health pediatrics at Texas Children’s Hospital and a professor of pediatrics a Baylor College of Medicine in Houston who has also specialized in child abuse. “There exists a large amount of variability between states and often within states as to how infant deaths are categorized. It makes meaningful, systematic prevention strategies very difficult to evaluate.”

 

If public health officials don’t know what’s happening, they can’t possibly figure out how to stop it. Even the definitions of different types of deaths can vary, so it’s hard to pick out trends: A change in this or that definition or practice could artificially inflate or deflate the numbers, Greeley explained.

 

One of the requirements of Moore’s bill, then, is that the Secretary of the Department of Health and Human Services develop standardized national guidelines for death scene investigations, autopsies and data collection after a stillbirth or infant or child death.

 

“Prevention of SUID depend upon a very clear and comprehensive evaluation of the entirety of the circumstances of death,” Greeley said. “This often means a comprehensive death scene investigation.”

 

The bill would also award grants to states so they can actually follow such standardized protocols, including training of medical examiners, coroners, law enforcement, emergency medical technicians, paramedics and other professionals responding to these deaths. Specifically, the bill would allocate $8 million toward death scene investigation and autopsy, $2 million toward training, $7 million toward developing state and local infant and child death review programs and prevention strategies and $1 million toward support services for grieving families. These services might include grief counseling, bereavement services, education and support groups. Another $3 million would go toward public health initiatives related to stillbirth, and $250,000 would be reserved for evaluating state and regional needs.

 

If these dollar amounts seem low, that may provide a clue at how little is already allocated toward investigating these deaths and developing strategies to prevent them. In fact, the recent state bill signed into law by presidential candidate and Ohio Governor John Kasich earlier this week cuts funding that went directly toward reducing infant mortality through the Healthy Moms, Healthy Babies program. The program, funded by Planned Parenthood, served nearly 2,800 new or expecting mothers but became one of the casualties when Kasich and the Ohio legislature cut all funding to the women’s health provider. Ohio’s infant mortality rate is already 23% higher than the national average, and the rate for black babies in Ohio is among the highest in the nation.

 

In a statement about the bill, Planned Parenthood Action Fund President Cecile Richards called the bill a political play that ignores the needs of Ohioans.

 

“We’ve seen he dire consequences for women, men and young people when politicians block access to care at Planned Parenthood,” she said, pointing to a subsequent HIV epidemic in Indiana and the recent findings in the New England Journal of Medicine showing that thousands of women lost their care in Texas after Planned Parenthood funding was slashed. Yet lack of prenatal care is one of the strongest risk factors for infant mortality.

 

If the situations in Texas and Ohio become a trend, that means even less money going toward reducing infant mortality, directly or indirectly. And meanwhile, cash-strapped counties and states will continue to stumble along in death scene investigations following a patchwork of different protocols.

 

“The better the causes of death are understood, the better families can be prepared to minimize risks to their child,” Greeley said. “The ‘Back to Sleep’ campaign is an example of how a better understanding of the circumstances around the death of an infant has helped a generation of parents.”