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Suspicions surface in cases termed 'sudden infant death'

By Richard A. Knox, Globe Staff, 09/09/97

A pediatric researcher says he has found evidence in the records of Massachusetts General Hospital that parents may have deliberately caused dozens of cases of sudden infant death or near-death, evidence that went unrecognized for years.

He charges that MGH doctors repeatedly rejected his suspicions and those of other physicians because they were committed to the notion that sudden infant death is often caused by a breathing problem that runs in families - a hypothesis now contradicted by other research.

The former research fellow, Dr. Thomas Truman, and an MGH psychologist, Dr. Catherine C. Ayoub, are detailing their charges in a scientific paper they intend to submit to the journal Pediatrics.

Truman first presented his data - indicating that as many as 56 out of 156 ''near-miss'' cases of asphyxiation among young MGH patients may have involved parental abuse - at an internal hospital meeting in the spring of 1996. However, the allegation was not reported publicly until yesterday, in a book on sudden infant death syndrome titled ''The Death of Innocents,'' by journalists Richard Firstman and Jamie Talan.

Attempts to reach Dr. Daniel C. Shannon, the MGH physician who has headed the hospital's sudden infant death program for many years, were unsuccessful.

When Truman first presented his allegations, the book reports, Shannon responded that the data were ''misleading'' and said the team did consider the possibility of child abuse but only documented its suspicions in private files. When, months later, Shannon provided some of those private files to Truman, they did not back up Shannon's contention, Firstman and Talan report.

The editor of Pediatrics, Dr. Jerold Lucey of Burlington, Vt., said yesterday that the allegations, along with other scientific evidence and a recent criminal case involving the conviction of an upstate New York mother for the murder of her five children, stand as a caution to pediatricians when they see multiple cases of sudden infant death or near-death in a family.

''Sudden infant death is not a hereditary disease,'' Lucey said. ''There may be some people who think it is. But the weight of the evidence is that it doesn't run in families. SIDS is a terrible, tragic disease than can occur once in a family. But if it occurs twice, it should be investigated.''

Lucey suggested that Truman's revelations should prompt a criminal probe of suspicious cases at MGH, and possibly at other US medical centers.

If similar evidence had been uncovered at the University of Vermont Medical Center, where Lucey practices, he said, ''We'd write to the police and urge a criminal investigation.''

Lucey said Truman's evidence indicates that some MGH researchers believed so strongly that sudden infant death could run in families ''that they didn't try very hard'' to confirm darker suspicions. ''Nobody wants to believe that the mother could murder someone,'' Lucey said.

Shannon and his former colleague, Dr. Dorothy Kelly, who has left MGH, were at the forefront in advocating that babies deemed at risk of sudden infant death - for instance, because a sibling had suddenly died young or required repeated resuscitation - be sent home with electronic breathing monitors.

Home monitoring began in the 1970s, but it is still controversial, as is the notion that a defect predisposing a child to sudden infant death can be identified in advance.

In one 1986 scientific report, the MGH researchers described 28 families that had two or more deaths attributed to sudden infant death between 1973 and 1986. A subsequent paper on these families reported that two of these 28 families had had a third death and two others had had four such deaths, while six parents said they had had near-death episodes with a third child.

Firstman and Talan say the infant deaths in the 1986 and 1987 papers could have totaled as many as 62. In an interview with the book's authors, they said that Shannon acknowledged it is possible that 14 deaths described in a 1987 paper might have been due to murder rather than sudden infant death syndrome.

''You'd have to ask if any are infanticide,'' Shannon told the authors. ''We just didn't know.''

Truman, in a telephone interview yesterday from Tallahassee, Fla., where he now practices, said he went public with the charges because he wanted ''to get the word out that these types of things happen.''

''Many pediatricians haven't considered or recognized this type of abuse,'' he said. Doctors' failure to suspect parental abuse in families with repeated cases of sudden infant death or near-sudden death ''has not been malicious for the most part. It's so hard for most people to conceive of these heinous abuses being acted out by murderous mothers that that's why a lot of people haven't considered it in the past.''

Doctors call such episodes ''Munchausen syndrome by proxy,'' in which a parent deliberately makes a child sick, or even kills a child, in order to attract attention or create drama.

Truman declined to detail his MGH findings pending their scientific publication. However, he verified that the account in Firstman and Talan's book ''is as accurate as it could be.''

In one instance, Truman was consulted by a worried pediatric resident about a 1-year-old girl from upstate New York whose mother said she had performed about 80 resuscitations on the child at home. Shannon had admitted the baby to the MGH to install a cardiac pacemaker, on the assumption that the child had an underlying medical defect.

Investigating, Truman found that a specialist in Burlington, Vt., who had seen the girl's brother for similar life-threatening episodes, suspected the chidren's mother might be repeatedly smothering her child. When Truman called a public health nurse in the family's home county, Shannon called the nurse later and told her he did not share Truman's suspicions, the book reports.

After the child went home from MGH, the girl continued to have episodes requiring emergency room resuscitation. Truman heard regular reports from the county nurse that she shared his suspicions but was powerless to act against Shannon's testimony that the problem was medical. Eventually the child died.

Other cases unearthed by Truman involved children who never stopped breathing while hospitalized, sometimes for months, but had repeated episodes once they were discharged home.

''I don't have anything to prove that a single case was Munchausen by proxy,'' Truman said yesterday. ''But I hope my research shows that it hasn't been adequately considered in the past, and that it hopefully brings some cases to light.

''At the same time, we don't want the pendulum to swing too far the other way and incite a bunch of unnecessary witch hunts.''

This story ran on page A01 of the Boston Globe on 09/09/97.
Copyright 1997 Globe Newspaper Company.

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