SIDS Group’s Data Are Challenged

Los Angeles County health officials say the local foundation that raises money to counsel families affected by Sudden Infant Death Syndrome has overstated the local death toll and has breached the confidentiality of families whose children have died.

As a result, in a letter sent to the SIDS Foundation of Southern California this week, officials said they would no longer provide the group with the names of children who have been identified as possible SIDS victims.

The county’s actions were prompted in part by a parent activist who says the Ventura County coroner’s office erroneously attributed her son’s 1995 death to SIDS.

Heather Aitken, who runs a separate group to help grieving parents, contends that the SIDS foundation is publishing inflated figures in hopes of attracting donors and maintaining research funding despite the decline in SIDS.

Aitken said she has received harassing phone calls from people identifying themselves as being affiliated with SIDS organizations, telling her to stop challenging the SIDS cause. Money raised by SIDS groups, she said, is used for “their own hype, their own publicity.”

She says the money should be directed to all families whose children die, regardless of the cause.

SIDS Foundation Executive Director Margot Bennett said her group, whose board consists mostly of relatives of babies who died, has nothing but honorable intentions. She said she is confident that none of her members harassed Aitken.

Although some of its statements may have been incorrect, she said, any mistakes were inadvertent.

In its January newsletter, the foundation said that the SIDS rate had increased in Southern California despite a national decline. It listed the names of 75 children who died in 2001.

In fact, only 22 infant deaths last year were officially classified as SIDS, the lowest number ever, Los Angeles County health officials said.

All 75 infants’ deaths reported in the newsletter were initially investigated as possible SIDS cases, but the coroner found other causes or classified the deaths as being unexplained.

At least two are believed to have been homicide victims, health officials said.

Infants younger than 1 can be diagnosed with SIDS only if they die unexpectedly and if medical examiners cannot find any other possible explanation.

Listing the children’s names, Bennett said, was a way to honor them.

She said the SIDS foundation has printed such names for several years, and county officials have never raised an objection. The county says the names were given to the group in confidence and should not have been reprinted.

“We really are just there to help,” Bennett said of the organization, which has an annual budget of $70,000.

“We want to correct whatever we’ve done by accident, with no malice absolutely. We thought we were providing a service. We get many thanks for those names being published from parents as well.”

Tara Mendoza, 27, said one of her relatives sent a donation to the foundation after seeing her son’s name on the 2001 list. But Mendoza said the Los Angeles County coroner suspects that her son, Tyler, died of laryngitis, not SIDS, in December.

The newsletter is “strictly being used as a profitable game,” said Mendoza, a medical office referral coordinator. “They do not want to see the numbers go down.”

The county’s decision is a break from its long-standing practice of informing the SIDS foundation whenever it suspected that a baby had died of SIDS.

The foundation sent out letters offering its services to the families and it printed the babies’ names in its newsletter.

In the end, though, only a fraction of those babies had confirmed SIDS diagnoses.

Now, according to the county, public health nurses will tell families how to contact the foundation if they want help.

The foundation will be able to learn the names of babies who died of SIDS only after death certificates have been completed by the coroner’s office.

Wendy Schiffer, director of children’s health initiatives for the Los Angeles County Department of Health Services, said she doesn’t believe the SIDS foundation maliciously misrepresented the numbers.

“I really don’t know what their motive is,” Schiffer said. “I don’t think it was anything bad. They’ve apologized for doing it.”

Other SIDS groups around the country have also provided incorrect information on deaths attributed to the syndrome.

Until this week, the Web site for the Bucks County, Pa., chapter pegged the nationwide SIDS toll at 6,000.

The Iowa SIDS Alliance pegged the figure at nearly 4,000.

In fact, the National Center for Health Statistics reported 2,648 deaths in 1999, and preliminary data show that the figure dropped to 2,151 in 2000.

The annual total has dropped by more than half since 1992, when the American Academy of Pediatrics recommended that healthy infants be placed on their backs to sleep to reduce the risk of SIDS.

The chapters in Iowa and Bucks County updated their Web sites this week after The Times raised the errors with the National SIDS Alliance, the national umbrella group. The alliance sent out a memo asking its affiliates to provide factual information.

“Most of them are just volunteers out there whose main mission is to help families who’ve lost babies to Sudden Infant Death Syndrome, to give them grief support,” said Deborah Boyd, the alliance’s interim executive director. “They’re certainly not [misreporting the numbers] ... to garner more money.”

Although SIDS still remains the leading cause of death for infants between 1 month and 1 year nationally, the precipitous decline in SIDS has placed added pressure on support groups to survive and stay relevant.

Over the past few years, parent groups have lost veteran members, and new parents haven’t signed on.

“Many SIDS parent organizations that were once thriving are now barely holding on,” Ben Carranco, the state’s SIDS program consultant, wrote in a June newsletter.

As a result, some SIDS groups have expanded their reach to include other infants who die of unexplained causes.

The Southern California foundation said it began offering counseling for other infant deaths in January 2001.

And nationally, the SIDS Alliance is discussing a change in its name and mission.

Bennett said SIDS advocates are committed to being open and honest with the public.

“It would be an absolute shame if the only way to get funding out of the government was to inflate the numbers,” she said.

“It should just be enough that infants are dying and people don’t know why.”