By Rose Hoban

Any time a child dies it’s a tragedy, but in 2017, 1,313 children younger than 17 in North Carolina died. For each of those tragedies, local and state health officials, medical examiners and child health experts review the circumstances around each child’s death in an attempt to learn how to prevent the next child from dying.

But too often, those reviews are not coordinated across counties, and lessons that could be learned from looking at child death data on a statewide level get lost in a system that’s become too disconnected.

That’s the conclusion reached by members of the legislative Child Fatality Task Force, who spent the past year examining North Carolina’s Child Fatality Prevention System. The system features review teams based in each of North Carolina’s 100 counties, along with the state’s chief medical examiner and a state Child Fatality Prevention Team.

chart shows the leading causes of child death in NC with complications of pregnancy and child birth at the top
Leading causes of child death in NC, 2016. Table courtesy: NC Child Fatality Task Force

There’s one big flaw in the system, said Karen McLeod, a lobbyist who advocates for child safety issues at the General Assembly. She’s also co-chair of the Child Fatality Task Force.

“The buck doesn’t stop anywhere,” she said. “It was here, here, here… the buck didn’t stop anywhere, nobody was responsible.”

At a meeting of the task force last week, McLeod presided as the group voted to ask the General Assembly for a half million dollars to create a centralized office to streamline collection on child deaths, do better analysis, and coordinate the system.

“The intent is to have better communication, getting better information from the locals to the state level so that we’re getting timely and complete information to inform policy and legislative recommendations and hopefully reduce the number of deaths that are in this state,” she said.

‘We don’t know why’

“A lot of people when they think of… a child death, they think it’s something related to [the Department of Social Services],” McLeod said. “DSS is actually a tiny, tiny, tiny fraction of the number of youths who die, the bulk of it is premature babies.”

For example, of the 1,360 child deaths that took place in 2016, almost two-thirds of those deaths were infants under the age of one.

“A lot of the deaths that take place, we don’t know why this is,” she said.

Although North Carolina infant mortality rate has crept downward, the state still ranks in the bottom third of all the states in the U.S. for infant death. McLeod said that worse, there are areas of the state where rates are much higher.

“Many local teams are doing an excellent job of using what they learned to implement local strategies and local prevention initiatives,” said Kella Hatcher, a state employee who is the executive director of the Child Fatality Task Force. “We can do a better job at getting data to inform state level policy.”

Many counties also have disparate ways of recording, examining and analyzing data on child deaths, Hatcher told the task force. If everyone would use the same system, then someone at the new statewide office could more easily spot trends.

Another improvement could come if North Carolina participated in the federally funded national child fatality data system. Forty-six states across the U.S. contribute to the National Center for Fatality Review and Prevention, but North Carolina is not one of them.

“It’s the kind of system that is free to us,” Hatcher said. “We participate, we use the system to basically use our data and pull information out and aggregate and analyze it and disaggregate it and be able to produce meaningful reports.”

Too many cases

A further suggestion coming out of the task force is to reduce the number and types of teams performing child death reviews. Instead, Hatcher explained that the combined, streamlined teams should be more focused on reviewing fetal and infant mortality.

Used widely in 28 states, these programs use a standardized process of looking at medical records, interviewing family members, doing multidisciplinary reviews of fetal and infant deaths, finding gaps in the community system that may have contributed to the death, and then working to improve the local systems.

In the past, North Carolina had such a program located in the western part of the state, but the funding was eliminated in the late 1990s.

2007-2016 Trends in North Carolina child death rates for selected cause of death, ages birth through 17. Data courtesy: NC Child Fatality Task Force

Hatcher’s initial suggestion to the task force was to ask the legislature to fund three such mortality review programs, at an annual cost of $300,000 each. But Rep. Craig Horn (R-Weddington) said he didn’t think the full legislature could be convinced to find almost a million dollars for three new teams.

“We are going into a new budget year and we are recommending substantive changes already,” he said. “I recognize that if you don’t ask for it you don’t get it, but as an appropriations guy, I know the process well enough to tell you I think this is an overreach.”

Instead, the task force voted to ask for funding to create a pilot fetal and infant mortality review program and include some accountability measures.

“The accountability measures must be clear,” Horn said. “How do we know it’s working? How do we know it’s not working? How do we get to a touch point to know that?

“What happens is that we get a pilot program, people get hired, no one wants to fire anybody and things just are continued until someone gets angry or we run out of money. Accountability measures are critical to make this work.”

Michelle Hughes, who heads the advocacy organization NC Child, said this is an evidence-based program used in other states that will be a core piece of the child fatality review system.

”I think the piloting is part of a much larger overhaul of the whole system and learning what is the best way to implement that,” she said, referring to efforts to overhaul the foster care system as well as improve social services and child abuse and neglect monitoring.

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Rose Hoban is the founder and editor of NC Health News, as well as being the state government reporter. Hoban has been a registered nurse since 1992, but transitioned to journalism after earning degrees...