Maine has stood out on a key health indicator over the past two decades — and for all the wrong reasons.
While the nation’s infant mortality rate has generally been on a downward trend, the trend in Maine has gone in the opposite direction.
Maine, in fact, has been the only state to see a long-term increase in its infant mortality rate over the past two decades. It was the sole state with a higher infant mortality rate on average between 2005 and 2014 than in the previous decade, from 1995 to 2004.
It’s a sad statement about the health of our state: A high infant mortality rate could indicate that there’s a critical lapse, or multiple lapses, in the structures and resources set up to support infants, pregnant women and new mothers — whether during pregnancy, during delivery or once the family has returned home.
Fortunately, Maine finally looks poised to do something about it.
For about a decade, a state panel has been in place with the mission of investigating the deaths of fetuses, infants and mothers during pregnancy or within six weeks of giving birth. The work is crucial to understanding what is going wrong in Maine so policymakers, health care providers and social service agencies can focus on correcting it.
But the panel has been hobbled by the 2006 law that created it, which severely limits the group’s access to the information it needs to research infant deaths in detail. In order to review relevant medical records — which could reveal information about where a whole system of medical and support services failed — the panel’s coordinator must first seek the family’s permission. But the coordinator can’t reach out until four months after an infant or new mother has died. The outreach can only happen by letter with state agency letterhead.
There’s a good chance many letters don’t reach their intended recipients; many families move after losing an infant, searching for a fresh start. The letters that do reach the intended recipients go unanswered. What family wants to relive the pain of losing an infant four months after it happened?
Indeed, no infant death case that the Maternal, Fetal and Infant Mortality Review Panel has looked into has come to the panel through the letter request process. That means Maine could be missing out on crucial information or trends that could help it prevent future infant deaths.
It’s understandable for families who have lost infants to seek privacy, but there are other provisions to protect privacy written into the law: Review panel members never review personally identifiable information about infant deaths. There are exceptions written into federal medical privacy rules specifically for public health reasons — to identify threats that could affect the health of many others. And no other state panel across the country that looks into infant deaths is subject to the same restrictions as Maine’s panel.
We’re heartened to see a legislative consensus emerging this year that could lead to the Maternal, Fetal and Infant Mortality Review Panel gaining access to the information it needs in order to thoroughly look into the reasons behind infant deaths in Maine.
The Department of Health and Human Services has submitted legislation to remove the need for the panel to obtain the family’s consent in order to review medical records. The agency also plans to restart the panel at the end of March after a hiatus of nearly three years.
A Republican senator from Dixfield is proposing legislation that goes even further than the DHHS bill: In addition to removing the barriers to information, Sen. Lisa Keim’s bill would require that the infant death review panel meet at least twice per year — an important provision for a panel that simply stopped sending letters and meeting in 2014 — and that it specifically look into why Maine’s infant death rate has risen over the past two decades. Democratic Rep. Scott Hamann of South Portland will sign on as a co-sponsor
When it comes to a priority so basic as preventing the deaths of Maine’s youngest, we’re happy to see seeds of consensus in Augusta rather than conflict.