Plagiocephaly, sometimes known as "flat-head syndrome," is easily treated in most cases.
Credit: Vanessa Van Rensburg | Dreamstime
On Dec. 29, 2009, Dearea, a mother in Baltimore, lived every parent's nightmare. After taking her 1-month old son Charlie out of his bassinet in the early morning, and laying him down to sleep next to her when he had finished nursing, she awoke later to find he was not breathing.
She yelled to her husband to call 911, and to her mother to begin CPR. They rushed Charlie to the hospital. "I'm praying that he's going to be ok," Dearea later recalled.
There had been no signs of trouble before that day. Dearea had had a healthy pregnancy, and brought Charlie home shortly after he was born.
But after Charlie was taken to the hospital, doctors informed Dearea that there was nothing they could do to safe her son's life.
In following weeks, Dearea, who did not want her last name used in this story, called the medical examiner's office every day to see if they had determined the cause of Charlie's death.
When she finally received the death certificate, she learned Charlie had died of Sudden Infant Death Syndrome, or SIDS. The medical examiner informed Dearea her son's heart had stopped, but there were no signs of crushed ribs or suffocation.
"It was such a relief, almost, that it wasn’t my fault," Dearea said. "[It's] hard for a mother to live with the fact that you could have done something else," she said.
Charlie was one of the more than 4,500 infants in the United States who die suddenly from no obvious cause each year. Anytime there is a sudden unexpected infant death (SUID), experts investigate. Sometimes a medical examiner will find the cause; if a cause of death cannot be determined after an investigation, the death is deemed to be caused by SIDS, or "unknown cause."
But the sole listing of SIDS on a death certificate reveals little about how the baby really died. With a new database, called the SUID Case Registry, run by the Centers for Disease Control and Prevention, experts are now aiming to collect detailed information about such cases to figure out how to better prevent such tragedies.
Health officials have already investigated more than 1,000 cases over the last three years, and have used that information to begin to implement prevention strategies.
Unclear cause of death
The main problem when researching cases of SUID is often that medical examiners may classify deaths differently depending on their level of training and experience, as well the information that they receive from the scene.
"To one medical examiner, everything is suffocation. To another, everything is SIDS," said Lena Camperlengo, program coordinator of the SUID Case Registry.
The database collects more than 1,200 variables related to each case, including information about where the baby was sleeping, what position he was in when he was found, whether there were additional items in the crib, whether the baby was breastfed and whether there have been any other cases of SIDS in the family.
Often, parents are asked to re-enact, with dolls, how they placed the baby down, and how they found the baby after his or her death. The position of the nose and mouth in the re-enactments can help a medical examiner determine whether a death was due to suffocation, Camperlengo said.
Currently, nine states receive funding to collect information for the database (Arizona, Colorado, Louisiana, Michigan, Minnesota, New Jersey, New Mexico, New Hampshire and Wisconsin), and many others are collecting the information voluntarily. Previously, such detailed data may not have been gathered, said Shannon Stotenbur-Wing, director of Center for Child & Family Health at the Michigan Public Health Institute.
Michigan researchers reviewed 140 cases of sleep-related infant deaths in 2010. In nearly 60 percent of cases, blankets were in the crib, bassinet or playpen where the child was sleeping at the time of death, Stotenbur-Wing said. An ideal baby bed consists solely of a firm crib mattress covered by a fitted sheet, with no additional blankets, toys or other objects, according to the American Academy of Pediatrics.
Registry information from Michigan also showed that mothers in 70 percent of cases were on Medicaid. Now, parents of newborns on Medicaid in the state are given brochures on safe sleep. It took a push to get the brochures made and distributed, but "it's saving lives," Stotenbur-Wing said.
New Jersey is working to get information on safe sleep into family resource centers, said Lisa Hartmann, program manager of the SUID grant in New Jersey. Hartmann said she has worked to understand parents' circumstances, and recognizes that not everyone has the resources to purchase a crib for their baby, or keep it when they move.
Hartmann said it's important to encourage parents not let their babies sleep in the parents' bed, and tells them the baby would be safer "in a drawer on the floor," than in the bed with them.
Hartmann is also working with the New Jersey department of education to have middle schoolers make drawings of safe sleep environments, which will be entered into a calendar contest. The calendar will be given out at Medicare and Women, Infants and Children (WIC) centers, Hartmann said. This way, the message will reach both younger and older generations.
After Charlie passed away, Dearea was part of a public service campaign on safe sleep for B'more for Healthy Babies, which aims to improve the health of babies and mothers in the Baltimore area. She said she had not received information about safe sleep before she was a part of the campaign.
Campaigns are a good place to start, but Dearea said there should be more research into the risk factors for unexpected infant death.
"It shouldn’t be that the only way you found out [your child is at risk] is through an autopsy," Dearea said. "There should be some kind of warning," she said.
Pass it on: Health officials have investigated more than 1,000 cases of unexplained infant deaths to figure out how to better prevent such tragedies.