BOSTON — While the number of children under one year of age who die of SIDS has been declining, it is still the major cause of death in infants between one month and one year of age in the United States.
It is an issue that is just as tragic as it is inexplicable.
For Maggie Mancuso, however, the pain was drawn out for years after her child's death when she had to fight for answers from the medical examiner's office.
Mancuso's son, Ambrose, was only 28 days old when he died unexpectedly in his sleep. It took the state medical examiner's office three years to release the cause of death: SIDS, or Sudden Infant Death Syndrome.
[ Families can wait months, even years, for autopsy results from medical examiner ]
"Immediately, as soon as I lost my son, it was an upward battle," said Mancuso.
Testifying before a panel of state lawmakers, Mancuso described her experience with the Massachusetts medical office, taking a stand so other families won't have to go through what she did.
"Phone calls aren't answered, emails aren't responded to, families are left not for weeks, not for months [but] families are left for years," said Mancuso.
After three years, Mancuso finally learned her son had died from SIDS but says that, during that time, there was no empathy or support from the medical examiner's office. Instead, she says, she felt like a burden.
Dr. Richard Goldstein, the director of a Boston Children's program that studies unexpected child deaths says Maggie's story isn't unique.
"The actual autopsy that's done in our state is the same autopsy that was done 50 years ago," said Dr. Goldstein. "If your child, your grandchild dies this way you would hope that the medical examiners might be able to offer some help. Instead, as you've just heard they report indifference, long delays, poor communication."
[ 25 Investigates: Documents suggest Chief Medical Examiner tried to hide info from Boston 25 ]
The issue has caught the attention of Senator Joan Lovely from Salem, who submitted a bill aimed at helping families affected by SIDS.
The bill would require the medical examiner's office to immediately alert parents when SIDS is the presumed cause of their child's death and make them aware of the many resources available to help them navigate the situation.
Back in February, the medical examiner's office told 25 Investigates they were creating new policies to improve communications with families. When we requested those changes in writing nearly four months later, a spokesperson told us it was in its final stages and near implementation.
"These families need the help immediately," said Lovely. "They are struggling with the death of their baby so they absolutely need to know what these resources are right away."
"I'm happy that I went public," said Mancuso. "That was scary. I"m happy to see all the rest of the families that are coming together."