A state panel charged with examining the reasons behind infant deaths in Maine, which stopped doing its work for nearly three years despite a rising infant mortality rate, will resume meeting at the end of March.
In addition, the LePage administration and a Republican state senator are both proposing changes to the law to make it easier for the panel to complete its work.
The Maine Center for Disease Control and Prevention last week started reaching out to potential members of a reconstituted Maternal, Fetal and Infant Mortality Review Panel.
The panel’s first meeting is set for March 29, according to a Jan. 23 letter sent to current and potential new panel members by Dr. Christopher Pezzullo, the state health officer at the Maine CDC.
“Maine has experienced a concerning increase in its infant mortality rate over the past four years, and the MFIMR is poised to take a leadership role in undertanding [sic] its genesis and proposing solutions,” Pezzullo wrote in the letter obtained by the BDN.
The CDC didn’t say why it was restarting the panel now. But last August, the BDN reported that Maine was the only state to see a long-term increase in its infant mortality rate over the past two decades. Only Maine had a higher infant mortality rate on average between 2005 and 2014 than in the previous decade, from 1995 to 2004.
In 1996, Maine had the lowest infant mortality rate in the nation and, potentially, the world. For every 1,000 babies born, 4.4 died in their first year. Maine had the lowest infant mortality rate again in 2002 — 4.3 infant deaths for every 1,000 live births.
But the state’s infant death rate has generally risen since then, while the national rate has fallen. In 2013, there were 7.1 infants deaths for every 1,000 births in Maine, the eighth highest rate in the nation.
Maine’s infant mortality rate has dropped some in more recent years — it was 6.7 in 2014 (13th highest in the U.S.) and 6.6 in 2015 (19th highest), according to data from the U.S. Centers for Disease Control and Prevention.
The state, however, still exceeds the national average for infant deaths. In 2015, 83 babies died in Maine before their first birthday.
There’s no obvious explanation for the rise, the BDN found, though the rise in infant deaths is statistically significant. The rates of Maine babies dying due to birth defects, pregnancy complications, prematurity or low birthweight, and Sudden Infant Death Syndrome have all generally risen since the late 1990s.
But, without a closer examination, experts the BDN interviewed last summer could not pinpoint specific reasons for those causes of death.
“There aren’t any home runs there other than poverty, lower socioeconomic status and the sort of general drivers of health care outcomes and health-seeking behaviors,” Dr. Mark Brown, chief of pediatrics and medicator director of the neonatal intensive care unit at Bangor’s Eastern Maine Medical Center, said last August.
In Maine, where the number of infant deaths each year is statistically small, health experts recommend examining the circumstances of each and every loss, so state officials, health care providers and others can better understand how families can be supported, identify gaps in services and resources, and piece together any emerging trends.
Under Maine law, the work of examining those infant deaths falls to the Maternal, Fetal and Infant Mortality Review Panel. But the panel has been largely unable to do that work since it formed.
Under the 2006 law that created it, the panel coordinator’s job is to review the deaths of all women during pregnancy or within 42 days of giving birth, the majority of fetal deaths that occur after 28 weeks, and the majority of deaths of infants under 1 year of age. The coordinator then provides summaries of each death to panel members without including identifying information.
But the panel and its coordinator don’t have automatic access to the relevant medical records. Under the law that governs the panel, the state health officer must request them in writing through a letter to the family, and the health officer can’t send that letter until four months after an infant or mother’s death. The four-month waiting period also applies to a request from the panel coordinator to interview family members.
That provision has proved virtually unworkable in the panel’s decade-long history, and the provision is unusual.
Jodi Shaefer, director of the National Fetal and Infant Mortality Review Program, which assists maternal and infant mortality review panels across the country, said in December she had never heard of a panel that has to wait four months to contact a family.
It’s unlikely families would want to talk after that length of time, she said. It’s also common for people to move following the death of a baby, reducing the chances that a letter from the state would reach the family.
“People think if they move they’ll leave their pain behind,” she said.
The Maine CDC testified in 2009 that just 10 percent of available death certificates had reliable contact information. And not a single case for review has come to the panel as a result of a letter from the Maine CDC.
Of the few cases the panel has reviewed, either a family came to it directly or through a medical professional’s referral. Dr. Jay Naliboff, vice president for medical affairs at Franklin Memorial Hospital in Farmington and the panel’s most recent co-chair, told the BDN last summer that the panel conducted fewer than six interviews since it started its work.
The panel reviewed only two of the 85 infant deaths in 2014, and the panel has been entirely inactive since May 2014, according to the Maine Department of Health and Human Services.
“The legislation surrounding the Maternal, Fetal and Infant Mortality Review Panel has always been restrictive,” DHHS spokeswoman Samantha Edwards wrote in an email. Another state panel, which investigates the deaths and serious injuries of older children, doesn’t face the same restriction. It can review relevant medical records without a family’s consent, which is consistent with exceptions made for public health reasons in federal medical privacy rules.
In his letter to current and potential review panel members, Pezzullo wrote that the panel will discuss at its first meeting “the more robust process now in place for reaching out to families prior to a case review.”
He also announced a new CDC staff coordinator for the panel, and the group’s shift to the CDC’s Division of Licensing and Certification from the Division of Population Health. The Division of Licensing and Certification, where the coordinator currently works, is responsible for licensing medical facilities and tracking “sentinel events,” which are health care errors that result in patient death or harm.
While the law hasn’t changed yet to allow the panel to use a “more robust process” to obtain information, the Department of Health and Human Services has proposed legislation that would allow the panel to access relevant medical records related to fetal and infant deaths without the family’s consent.
“These changes will improve the ability of the Panel to meet national best practice recommendations for reviewing deaths and identifying opportunities to prevent future deaths,” Edwards wrote.
Sen. Lisa Keim, R-Dixfield, has also proposed legislation that would allow the panel easier access to needed records. In addition, her bill, “An Act To Reduce Maternal, Fetal and Infant Mortality,” would require that the panel examine why Maine’s infant mortality rate has risen in the past two decades and report back to the Legislature, and put a requirement in law that the panel meet at least twice annually, Senate Republican spokeswoman Krysta West wrote in an email.
Rep. Scott Hamann, a South Portland Democrat, had proposed legislation related to the infant mortality review panel but said he will instead sign onto Keim’s bill as a cosponsor.
“I think it’s good to have somebody from the Senate working on this, and across chambers and across parties,” he said. “I think this should be a nonpartisan issue.”
Maine Focus is a journalism and community engagement initiative at the Bangor Daily News.