Data incomplete when it comes to infant deaths

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BIRMINGHAM, Ala. (WBRC) -- It’s not a ranking anyone is proud of and one that countless people are trying to change. Even Coach Nick Saban is taking time away from the sidelines to talk about how babies are sleeping and dying in Alabama.

Infants die at a higher rate in Alabama from Sudden Unexpected Infant Death (SUID) than any other state in the country.

“Let’s kick off this year by reducing the rate of infant deaths from unsafe sleep,” said Saban in a 35-second public service announcement released by Alabama’s Department of Public Health. Near the end of the spot, the University of Alabama’s head football coach says, “Let’s make this year a winning season for babies by creating a safe sleep environment.”

Since the PSA started airing last October, nine babies have died in Jefferson County due to co-sleeping or unsafe sleep.

While SUID rates provide an estimation for how many infants die in Alabama from sleep-related causes, there is no complete count.

Coroner's Call

Infants, children younger than one year, are dying in every county of the state from unsafe sleep. But county to county, the same deaths are classified in different ways.

“All those cases are classified as undetermined cause, co-sleeping is a contributing factor, and undetermined manner,” explained Lina Evans, Shelby County Coroner.

A coroner is an elected position in Alabama and the only education requirement to run is a high school diploma. Evans was elected as Shelby County’s Coroner in 2018 and has worked for the office for ten years. She is a Board Certified Fellow with the American Board of Medicolegal Death Investigators (ABMDI) and is the only person with this voluntary accreditation in the state of Alabama. She is not a medical examiner but has a background in nursing, including a master’s degree in forensic science.

Evans says her background has prepared her for her job's biggest responsibility, determining the cause and manner of death for all unattended deaths.

When an infant dies, she works with law enforcement to investigate every possibility.

"Any kind of criminal angle, we are looking at the history of the baby, was there something wrong with the baby? Did it have a medical history that we didn't know about? Is it up to date on its immunizations? Was the baby sick at the time of death? So, we look at all of that," explained Evans.

In nearly every infant death Evans has investigated, there was no underlying issue or foul play.

"A lot of times, unfortunately, we know it was from co-sleeping."

Since 2016, eight infants have died in Shelby County. Two were due to natural causes. The six others were "undetermined" causes but Evans determined co-sleeping, or an unsafe sleep environment, contributed to the deaths. The causes of death are listed on the death certificate as "undetermined," although asphyxiation is assumed, Evans says many times, autopsies are inconclusive.

"Generally, that will come back as an 'undetermined' cause of death so we cannot determine what happened, but we do know that co-sleeping was a contributing factor."

Coroners have the final say in determining deaths and there are no state guidelines when it comes to classifying sleep-related causes of deaths in infants, or any other death. Bill Harris, Lee County Coroner and Executive Director of Alabama Coroner's Training Commission, says more training is needed, not set guidelines.

"Every case is different," said Harris.

A mother's loss

Eight infants have died so far in 2019 due to co-sleeping, according to Bill Yates, Chief Deputy Coroner, Jefferson County Coroner/Medical Examiner's Office.

Year over year, more infants die due to unsafe sleep in Jefferson County than any other reason. The rate peaked in 2016 when 18 infants died in co-sleeping, including Sarah Danneman’s 2-month-old daughter, Sophia.

"She was a really happy baby, she got warm with everybody," said Danneman with a smile.

Sophia was born early and while she weighed only 4 pounds, she was healthy. Danneman said she was her “rainbow baby,” her blessing after a miscarriage.

"She and her sister were very close, and you know, we cherished every moment with her."

Moments of pure joy and extreme exhaustion. Danneman had preeclampsia and a difficult delivery. Two months later, she was still "really weak, really tired."

"We did it in shifts," said Danneman when talking about sleep. The night Sophia died, Danneman was in her bed and said Sophia was with her dad on the couch.

“When he woke me up, it was 4 in the morning and I was thinking, ‘OK, it’s time for a feeding,’ and I get in there in the living room and he hands me my daughter, and she’s not moving.”

Nothing could be done. Sophia was gone.

"There is always that 'what if' situation but you can't go back in time and change anything… unfortunately," said Danneman.

It's not easy for Danneman to talk about what happened but she shares her story because since Sophia died, 23 more babies have died in Jefferson County the same way.

"I wanted to let everybody know that you know, co-sleeping is dangerous, as much as we want to think it is not," said Danneman.

She and her oldest daughter, Emma, represent Sophia in hearts. They see hearts everywhere and in everything. Rocks, clouds, potato chips - whatever they can pick up, they do and put in a box to remind them of Sophia.

“Even though I have lost my daughter, all of these things are reminding us of her and that she is with us at all times.” She adds, “It saddens me because I can’t enjoy her in person.”

The coding conundrum

Mortality data is primarily based on the information in death certificates.

Death certificates include four lines for cause of death and a section to include contributing factors of death. The cause of death is the medical reason a person died. A contributing factor could include an external or environmental condition, not necessarily medical, that led to a death.

Death certificates are submitted to the Center for Health Statistics (CHS) in the Alabama Department of Public Health (ADPH). The information from death certificates is also shared with the National Center for Health Statistics, which analyzes and codes the cause of death data.

Causes of death are coded for tabulation purposes based on the International Classification of Diseases, or ICD, as developed in-part by the World Health Organization (WHO). Death data is processed through computer software programs that “are written to apply WHO rules to select the underlying cause of death from all the conditions given on the death certificate.” The complex algorithm creates the most appropriate code. Causes of death codes are then grouped into categories “that are of public health interest and medical importance,” according to ADPH.

There are no well-defined codes for co-sleeping or sleep related deaths, according to the Director of the Division of Statistical Analysis within the CHS. Therefore, SUID, is the preferred grouping. The most common deaths within this group, in Alabama and nationwide, are Sudden Infant Death Syndrome (SIDS), unknown and accidental suffocation or strangulation in bed.

The cause specifically related to unsafe sleep, accidental suffocation or strangulation in bed, accounted for 8 of the 111 SUID deaths in 2017 in Alabama.

While SUID gives a glimpse of how often sleep related deaths occur, it's not a complete picture.

A more accurate count

Creating a more appropriate code for sleep related deaths is not something that can be done at the state-level, or quickly. Instead, state officials believe an immediate solution to a more accurate count is to have as much information about each death as possible.

Within the past year, ADPH has officially asked coroners to be more detailed when completing death certificates.

Harris says his goal is have every coroner in the state undergo training specific to infant deaths within the year. While he thinks "most" have had this training, cost, time and access has limited others from participating.

Preventable deaths

Despite not having a complete count, there is no debate that unsafe sleep is deadly to infants.

The safest way for a baby to sleep is alone, on their backs and in a crib with nothing but a tightly fitted sheet.

“I feel so bad for parents that have this happen to them because it is preventable and I know they think, 'If I would have just, if I could have just, if I could have only, if I would have done this,” said Lina Evans, “That is so heartbreaking about the case because it’s so preventable, just to put them back in their crib. And it’s OK for babies to cry... they can cry in their bed, it’s OK.”

Copyright 2019 WBRC. All rights reserved.

Read the original version of this article at wbrc.com.



 
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