Despite a rising death rate for Maine infants, the state panel tasked with investigating these trends has not sought detailed information about specific infant deaths for several months and appears to have ceased work altogether.
The Maternal, Fetal and Infant Mortality Review Panel has not convened in more than two-and-a-half years. Reports the group has submitted to the Maine Legislature confirm its last meeting was prior to June 30, 2014.
Maine is the only state to see a higher infant mortality rate in this decade than the previous decade. The Maternal, Fetal and Infant Mortality Review Panel, then, serves a unique purpose, as the only state entity tasked with conducting in-depth reviews of the majority of infant deaths.
This job is critical to both uncovering systemic issues that contribute to infant mortality and recommending improvements.
In August, the BDN reported that the infant mortality review panel had been unable to do its work. It could not find cases to review and wasn’t meeting; past and present members said the group was hamstrung by requirements put in place to maintain family privacy.
Originally the Maine Center for Disease Control and Prevention, within DHHS, was supposed to send letters to the families that lost an infant to ask if the panel could access their available medical records and talk with them — to better understand how families could be supported, identify any gaps in services and resources, and piece together any emerging trends.
In places with a statistically small number of infant deaths each year, such as Maine, health experts recommend examining the circumstances of each loss.
State law specifies that the first contact with a family “must be by letter from the State Health Officer on letterhead of the center.”
The BDN filed a formal request Aug. 18 for public information about the number of letters the Maine CDC sent to families in the previous four months to ask them to participate in the panel’s review process. With an average of about 85 deaths of infants per year, the BDN expected there would have been up to 30 letters in that time period.
On Nov. 9, Kevin Wells, DHHS general counsel, responded 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.”
The panel coordinator, Ellie Mulcahy, has continued to produce annual reports for the Maine Legislature that consist of statewide statistics on maternal and infant deaths, descriptions of activities in previous years, summaries of what other organizations are doing for at-risk infants and potential plans for the future.
The most recent report, for state fiscal year 2015, explained that the group didn’t meet after June 30, 2014, “due to the very limited number of cases available for Panel review.” It met three times in fiscal year 2014, which ran July 1, 2013 to June 30, 2014.
The 2015 report dedicated two-thirds of a page to the challenges the panel has faced such as “identification of cases, reaching families to obtain consent and staff time for record review.”
Mulcahy did not respond to two requests for comment over a period of eight days.
The panel’s co-chairman, however, has said it is not reviewing infant deaths. In August Dr. Jay Naliboff told the BDN the panel had not met, and cited CDC staff changes as a reason.
“I finally said, ‘I’m wasting my time.’ The CDC went through some changes, the staff are multi-tasking. It was not effective,” Naliboff said.
DHHS’ state health officer, however, said it is not true that the the panel has been “inactive” since May 2014.
While Dr. Christopher Pezzullo did confirm the panel has not been reviewing the circumstances of individual infant deaths, which is the hallmark of a maternal, fetal, and infant mortality review panel, he maintained that its work is being completed by other groups.
Pezzullo said the panel has had a “difficult time” meeting because of legal restrictions on obtaining details on specific infant deaths. Many of the members “have been continuing to do the work” through subcommittees of other federal and state initiatives.
Some of its members meet through a subcommittee of a different group that looks into the deaths of infants and children called the Child Death and Serious Injury Review Panel.
“Because the statute is fairly constraining for us, it’s important to know that we’re continuing to do the work. We have a subgroup of the Child Death and Serious Injury Review Panel, and we also have subgroups that are connected to [the national initiative Collaborative Improvement and Innovation Network],” Pezzullo said.
The Child Death and Serious Injury Review Panel, however, generally looks at infant deaths after the first month of life, according to Dr. Stephen Meister, a member of the panel. It will look at deaths earlier than the first month when specifically requested by the DHHS commissioner if a pattern of deaths has arisen, but examining those deaths is not within its typical scope of work.
In 2013 there were 91 infant deaths in Maine: Thirty-six died after their first month of life, and the other 55 died in the first month, according to the U.S. Centers for Disease Control and Prevention.
There are other jobs that the Child Death and Serious Injury Review Panel doesn’t do — that the Maternal, Fetal, and Infant Mortality Review Panel is supposed to do — such as improving coordination among obstetricians, gynecologists and nurse-midwives, preventing prematurity, and improving support for moms after giving birth, Meister said.
Furthermore, the child review panel’s attention is split between infant, child and adolescent deaths, and any childhood injuries.
The Child Death and Serious Injury Review Panel has powers that the infant mortality review panel does not. It can examine documents related to a case without the family’s consent, while the infant mortality review panel must wait four months after the death of an infant to contact the family to ask for access to documents and an interview.
“It is unfortunate that the statute for the Maternal, Fetal and Infant Mortality Review Panel is a difficult set of rules,” Pezzullo said. “The panel has been doing everything in its power to follow the guidance of the statute.”
The statute is written as it is in part because of DHHS Commissioner Mary Mayhew, who as a lobbyist for the Maine Hospital Association in 2005 opposed the first draft of the bill to create the Maternal, Fetal and Infant Mortality Review Panel, which would have granted the panel easier access to family information.
She supported the final legislation that instituted the four-month waiting period before the panel could reach out to families to ask permission to access documents. These guidelines were put in place to protect family privacy. Mayhew did not respond to a request for comment about whether she still supports the requirements.
Jodi Shaefer, director of the National Fetal and Infant Mortality Review Program, which assists maternal and infant mortality review panels across the country, said she had never heard of a panel that has to wait four months to contact a family.
She said it’s unlikely families would want to talk after that long, and it’s also common for people to move following the death of their baby, reducing the likelihood that letters from the state would even reach the family.
“People think if they move they’ll leave their pain behind,” she said.
In 2009, the Maine CDC testified before the Legislature that just 10 percent of available death certificates had reliable contact information. And no case the panel has ever reviewed has come to the panel as the result of a letter from the Maine CDC asking families for access to medical information, according to the group’s reports.
It has reviewed only a handful of cases in the last 10 years, Naliboff said. All of these cases came before the panel because a family member either contacted the panel directly, or a health care provider connected a family with the panel, according to the panel’s reports.
In 2015, Maine’s infant mortality rate was 7 deaths per 1,000 infant births, up from 6.6 in 2014, according to preliminary data from the United Health Foundation. In 2014, 85 babies died in their first year.
In the last decade in Maine for which finalized infant mortality statistics are available (2005 to 2014), every year an average of 85 babies died before their first birthday. That’s 12 more than the number of infants who died each year, on average, in the previous decade (1995 to 2004).
By talking to families and reviewing records, the panel was designed to understand the circumstances surrounding infant and maternal deaths, so it could recommend ways to reduce those deaths and the number of babies born prematurely.
“Infant mortality tells us that something is going on in Maine that’s not good,” Shaefer said. “Something is happening to the health of your community. I’d think you’d want to turn it around now.”
Maine Focus is a journalism and community engagement initiative at the Bangor Daily News.