Diagnoses in deaths starting to shift

Label being used less often in Colo., rest of the nation

Lisa Ryckman, Rocky Mountain News

Published October 8, 2007 at midnight

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At a checkup that morning, the doctor proclaimed 4-month-old Gavin Gratz a healthy baby, perfect in every way.

By the end of the day, he was dead - and nobody knows why.

The Boulder County coroner eventually classified Gavin's death as sudden infant death syndrome, or SIDS, and that made it official: There was no explanation and likely never would be.

"It's a very, very hard thing to understand," said Gavin's mom, Tara Gratz, 37. "You never really do, because there are no answers."

Across Colorado, coroners and forensic pathologists conduct meticulous examinations to try to explain the deaths of seemingly healthy babies - a total of 321 from 2000 to 2004. It can be an excruciating process, both for grieving families and for the experts trying to solve a tragic mystery.

"SIDS is a diagnosis of exclusion," said Triena Harper, Jefferson County's chief deputy coroner. "You do everything possible to find something, and if you don't find anything, and the child is under a year old, it's SIDS. You can't call it SIDS unless it's a totally healthy baby with no problems."

Winnowing out all other possibilities requires a full autopsy, toxicology screen, cultures, metabolic studies, X-rays and a medical history, among other things. Investigators also interview parents and caregivers and carefully examine the death scene.

"We need to know what position the body was found in," said Arapahoe County forensic pathologist Kelly Lear-Kaul. "We look at what the sleep surface was like; we inventory what's in the crib or on the bed - the blanket, pillows, any stuffed animals."

Variations among locales

Variations in the way different counties classify infant deaths mean that some appear to have only SIDS deaths, while others are using that label less often, mirroring a growing national trend.

Melissa Haberzettl, 29, of Colorado Springs, was convinced the El Paso County coroner had made a mistake by suggesting that viral pneumonia played a part in the death of her 3- month-old son, Jake, even though he had no symptoms.

"The coroner told us that Jake probably did not die of viral pneumonia. But there was a virus present in his system, so that is what they were calling it, because SIDS is a diagnosis of exclusion," she said. "Even if they could not conclude that the virus caused death, it was not called SIDS by definition."

Eventually, after consultation with an outside expert, the death certificate was amended to SIDS as the cause of death.

"Things that used to be called SIDS are being called something entirely different," Haberzettl said. "I don't know why. How can it be called one thing in one county and something completely different in another?"

Rethinking labels

Denver Assistant Medical Examiner Amy Martin said that some forensic pathologists are moving away from the term SIDS, replacing it with "sudden unexplained infant death" (SUID) or "undetermined."

She said the National Association of Medical Examiners is the driver behind the changing concept of SIDS, calling it a "functional approach" to infant deaths that reflects recent research.

Martin, a member of both the Denver County and Colorado state child fatality review committees, said that some research suggests SIDS babies have brain abnormalities that may put them at risk in certain settings, such as being positioned face down to sleep.

Last year, Denver reported eight cases of SIDS and two as undetermined. So far this year, there have been three SIDS deaths and one SUID, manner undetermined.

"SIDS was always looked at as a classic natural cause of death," Martin said. "We're rethinking that - if there are these external factors that contributed to the deaths, maybe we shouldn't be calling them 'natural.' We're starting to say the cause is 'undeter-mined' - we don't know if there are other things involved."

Lear-Kaul will classify a death as "undetermined" if there are factors that might take it out of the SIDS category without clearly putting it somewhere else: an unproved case of accidental asphyxia, for example, or indications of an infection that can't be verified by a culture.

"The totality of the circumstances is what it boils down to," said Boulder County Coroner -Thomas Faure. "It's an opinion, no question about that. The finding might be as simple as feeling that we didn't understand all the circumstances."

From 2000 to 2004, Boulder County reported seven SIDS deaths and three undetermined. Arapahoe County reported 28 infant deaths, with 22 classified as SIDS and five undetermined.

"We will use 'undetermined' when we have to," Lear-Kaul said. "We don't like to, because it's not a very good answer for anybody. It's frustrating for us, and it's frustrating for the family."

Loss of child bewildering

Tara and Kelly Gratz took some comfort from the SIDS diagnosis, but it still bewildered parents who already had one healthy child and thought they were doing everything right for their new baby. A strapping 9 pounds at birth, Gavin slept on his back, breast-fed exclusively and lived in a smoke-free home - all of which should have lowered his risk.

"Most parents, when they have a baby die for no apparent reason, almost universally feel they've done something wrong," said Susan Backus, social worker with the Colorado SIDS Program, a nonprofit education and support organization. "A SIDS diagnosis says in effect, 'You didn't do it. There wasn't something that could have been done to prevent it.' But it's a problem because it still isn't explained."

Gavin had been in for a well-baby checkup Aug. 11, 2006, then went to day care. Four hours later, Tara Gratz got the call.

"The day-care provider checked on him, and he had rolled over on his stomach and his lips were blue," she said. "They worked on him for 45 minutes at the hospital before pronouncing him dead. Even then, they told me it kind of looked like it was SIDS."

The SIDS diagnosis has helped Gratz stop blaming herself, but it also has put a damper on the joy of her current pregnancy. Although there is no proof of a genetic link with SIDS, Gavin's death has raised an anxiety for his mother that wasn't there before.

"I'll always want to know the answer," she said. "For the rest of my life, I'll wonder exactly what it was."

The facts about SIDS

• Babies at risk: SIDS is the leading cause of death in babies between 1 month and 12 months of age. There are about 2,000 such deaths annually.

• What age: Most SIDS deaths occur in babies who are between 2 and 4 months old. About 90 percent occur before 6 months.

• When: More SIDS deaths occur in colder months.

• Sleeping positions: Babies placed to sleep on their stomachs are much more likely to die of SIDS than babies placed on their backs to sleep.

• Ethnicity: Black babies are twice as likely to die of SIDS as white babies. American Indian babies are nearly three times more likely to die of SIDS than white babies.

REDUCING THE RISK

Place babies on their backs to sleep, with no head covering.

Use very light blankets with low room temperatures.

Covers should be tucked in. Tuck covers in at the sides so baby can't roll.

Pillows increase risk. Babies should lie on a mattress designed for infant sleep.

Premature infants sleeping facedown have 80 times the risk of SIDS.

Babies should live and sleep in a smoke-free home.

Infants sleeping with others in the same bed are at increased risk if they sleep with parents who drink, smoke or take drugs to sleep; if they are covered with quilts or comforters; and if they are less than 14 weeks old.

Infants should sleep in the same room with the parents in a safe infant bed or bassinet for the first few months of life. RESOURCES

•Online: sidsalliance.org or www.keepkidshealthy .com/welcome/ safety/back_to_sleep.html

• Services: The Colorado SIDS Program offers free services to families faced by the tragedy of an infant death, including information, home visits and support groups. For more information, call 303-320-7771, 1-888-285-SIDS or go to coloradosids.org.

• Contributions: May be made online or sent to The Colorado SIDS Program, 425 S. Cherry St., Suite 890, Denver, CO 80246-1235Sources: Sidsalliance.Org, Dr. Norman Friedman Of Children'S Hospital

ryckmanl@RockyMountainNews.com

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