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"Unknown" devastating diagnosis in fight to save Oklahoma babies

Hundreds of children are dying in Oklahoma and one word could be the difference between ignoring a growing problem and providing life-saving education.

It is a word that still troubles Ali and Derek Dodd: unknown.

Their son Shepard died in 2015 at an in-home daycare. Officially how he died is a mystery. The medical examiner’s autopsy report cites “unknown” as Shepard’s manner of death.

“We don't understand the unknown, there is so much that is known, we know exactly how Shepard was found,” Ali said, “He was swaddled in a car seat, unbuckled and left unsupervised for two hours so the fact that we know so much makes "unknown" not make very much sense to us.”

Unknown.

It is just one word; a single checkbox on an autopsy report that the Dodds and other child advocates say is doing damage.

“Years ago SIDS (Sudden Infant Death Syndrome) was used as a compassionate diagnosis but now it seems that "unknown" is the new compassionate diagnosis,” Ali told FOX 25.

FOX 25 requested every autopsy report for a ten-year period for children under the age of five. It took several months for the Office of the Chief Medical Examiner to fill the request and months more to organize and analyze the documents.

Our review saw the shift of SIDS fading out as a cause of death listed on autopsy reports, it was replaced with a new designation, “Sudden Unexplained Infant Death.” Those titles just refer to the cause of death. The medical examiner also has to determine the manner of death. The manner is described as natural, homicide, accident or, in a growing number of cases, unknown.

“Unfortunately, you can smother an infant on purpose without there being any physical signs,” said Lisa Rhoades the program manager for the Child Death Review Board with the Oklahoma Commission on Children and Youth (OCCY).

It is her job to review the same cases we reviewed and more. Our review covered 1,025 children that died in the decade our request covered.

Those reports detailed hundreds of cases where babies died with an “unknown” manner of death or unknown causes of death. In some cases pathologists would note that there was medical evidence that indicated a child had suffocated due to an unsafe sleeping environment, but still ruled the death natural or unknown.

“If we're really going to address this problem we need to know a whole lot about the sleep environment,” Rhoades explained to FOX 25.

Our review of records found some pathologists would leave out any details about how a child was found and would list no details on the circumstances of the death. A majority of the official reports indicate circumstances of the death as an official section of the report.

It is not known why pathologists refused to fill out details that could aid in identifying issues related to the state’s high infant mortality rate. The medical examiner’s office told FOX 25 the chief medical examiner was too busy to sit down for an interview to answer specific questions about how these reports are handled.

Child advocates say unknown as a cause or manner of death makes getting legal action difficult and in some cases can mask the issues behind infant deaths.

“It's not unknown to the point of we recognize what risk factors were present,” Rhoades said.

The message of safe sleep is not as easy to get through to parents as you might imagine Rhoades told FOX 25. “Getting a behavior change is tough. Especially when you have to fight the mindset of ‘It's not going to happen to me.’”

There are efforts to reach new parents through a program called “Preparing for a Lifetime.” The OCCY says it is also combating a drop in enrollment in parenting classes offered prior to a baby’s birth.

The efforts are focused on promoting safe sleep for infants. The OCCY is also working to ensure child deaths are more thoroughly investigated. They provide a 20-page case report that will allow researchers a chance to see what sleeping options were available to families and what factors were present when children died.

The biggest message is defining what safe sleep is and what it is not. The OCCY promotes children sleeping in cribs or bassinets without loose blankets or pillows. Children should be placed face up. Sharing a bed with a sibling or an adult greatly increases the chance an infant will die.

“You don't hear about cases like this very often, but it is one of those things where every little bit counts,” said Derek Dodd. He and Ali have worked to get legislation passed to define safe sleep surfaces for daycares.

The Dodds continue their fight for children. They would also like to see a change in reporting to remove the “unknown” in cases where there is so much known about the way children died.

The OCCY has also made recommendations to the medical examiner’s office on how it should report child deaths and suggestions for changes on official autopsy reports.

The OCCY is also promoting a program for hospitals to provide sleep sacks for parents of newborns. These sleep sacks are provided at no cost to parents or hospitals and allow infants to be covered without the dangers associated with loose blankets. However, the commission said even though the program is free not every hospital has agreed to take part in the program.

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