Maine is the only state to see more infants dying in this decade than the previous one, and the state group tasked with figuring out why has not been doing its job.
The state’s Maternal, Fetal, and Infant Mortality Review Panel has not met for years, as the BDN first reported four months ago. In recent months and perhaps for longer, it hasn’t attempted to review the details surrounding individual deaths.
It’s time for the Legislature to grant the panel the expanded powers it needs to do its job and fulfill its responsibility.
In the United States the number of babies who die in their first year of life has decreased fairly steadily, but Maine saw, on average, 12 more infants die every year between 2005 and 2014 than in the previous 10 years. Meanwhile, the number of babies born here has decreased.
Infant mortality isn’t just sad — it is is a telling indicator for how well a place is doing.
“If I were given the choice of only one piece of data to measure the health of a society, it would be infant mortality, since it is an indicator of the health of three populations that are very vulnerable — infants, pregnant women and postpartum women — all of whom need the support of their society for optimal outcomes,” said Dora Mills, vice president for clinical affairs at the University of New England and the former director of the Maine Center for Disease Control and Prevention in August.
The director of the National Fetal and Infant Mortality Review Program, Jodi Shaefer, echoed Mills’ sentiment. “Infant mortality tells us that something is going on in Maine that’s not good,” she said. “Something is happening to the health of your community. I’d think you’d want to turn it around now.”
The review panel is supposed to conduct in-depth reviews of the majority of infant deaths. The Maine CDC, within the Department of Health and Human Services, is supposed to send a letter asking families for permission to view records and conduct interviews to understand what went wrong. Then, the panel of health experts is supposed to review those cases and make recommendations to the Legislature about how systems need to change.
Current and former panel members said the process of asking families for permission to review cases was too restrictive. They can only request permission to access a family’s information four months after an infant’s death — a time lapse public health experts don’t recommend. They have only been able to review a handful of deaths since the panel’s start in 2005.
But it looks like lately the group has not even been trying to review deaths: In response to a formal request for information regarding the number of letters sent to families seeking permission to review information related to specific deaths from May to August 2016, Kevin Wells, general counsel for DHHS, replied with one sentence: “The Maine Maternal, Fetal and Infant Mortality Review Plan has been inactive since May 2014, therefore no letters have been sent to families in the timeframe your (sic) requested.”
Wells did not respond to a request for clarification on what exactly he meant by “inactive,” nor did DHHS spokesperson Samantha Edwards.
It’s clear, though, that the group has not met in the last two-and-a-half years, according to the reports the panel coordinator submits to the Legislature.
Over that time the panel never went back before the Legislature to ask for expanded powers. Members of the panel said there was a feeling that if they asked for an easier process for reviewing deaths, the panel would be noticed and canceled altogether.
Canceling the panel or leaving it without the power to review deaths would be egregious at a time when Maine’s infant mortality rate is above the national average.
The Maternal, Fetal and Infant Mortality Review panel should be given the right to subpoena records and contact families without restriction — the panel members are well-versed in confidentiality and capable of treating a grieving family with dignity. A similar panel, the Child Death and Serious Injury Review Panel already has those powers.
If infant well-being is a priority for legislators — and it should be — they must attempt to revitalize the panel. If those powers are granted, the panel should be required to perform its duty as laid out in statute, by reporting to the Legislature if necessary since DHHS has let it lapse.
Leaving the panel in purgatory is an affront to the families whose babies have died in recent years and to the experts in the state who would like to look for the reasons behind this public health crisis so they can try to solve it.
