KNOXVILLE, Tenn. (WVLT) - Nothing in this world will fill your heart like the love of a child. But Elisha Palmer learned that nothing in this world will break your heart like the pain of losing one. She described her baby Knox as happy and seemingly healthy.
So, when she dropped him off at daycare when he was just three months old, Elisha said she wasn't ready for what happened next.
"I kissed him goodbye, he smiled, everything was perfect. He was dropped off at the daycare and several hours later I get the call there’s an emergency. I met the EMT workers, we pulled in at the same time, and they were carrying him out. He was wrapped in a blanket, I could see his legs hanging out and I knew it was really, really bad at that point," Elisha remembered.
Sadly, another East Tennessee family has a similar story. Courtney and Anthony Sing lost their daughter Cassie when she was just two months old. EMTs rushed Cassie to the hospital where doctors eventually told the Sing's that their baby didn't survive.
"We had plenty of people with us, but at that moment, I just wanted her back. I didn’t care who was there," Courtney said.
The lives of both families intersected in a remarkable way. Both shared their stories in hopes of helping other families avoid similar heartbreak. Their candid accounts of loss and survival inspired WVLT News Anchor Amanda Hara to investigate what happened to their children and learn new ways for other families to reduce the risk. Experts say it's time to wake up so our babies wake up.
Sudden Infant Death Syndrome, or SIDS, is the most common cause of death for babies in the first year of life. In Tennessee, kindergarten classrooms worth of children die every year from SIDS, according to
Dr. Mary Palmer at East Tennessee Children's Hospital.
WHAT IS SIDS?
Learning about SIDS and practicing safe sleep for babies is vitally important for all caregivers, not just parents. That means grandparents, aunts, uncles, babysitters, childcare providers and anyone else who may be tasked with caring for a baby should learn as much as possible about SIDS and safe sleep.
Understanding SIDS and Sudden Unexplained Infant Death (SUID) isn't easy. Not for doctors, not for researchers, and especially not for parents. In the simplest of terms, it is the moment a seemingly healthy baby dies silently, suddenly and without explanation.
SUDDEN UNEXPECTED INFANT DEATH (SUID):The National Institute of Child Health describes this as the sudden and unexpected death of a baby less than one year old where the cause is not obvious before an investigation. After a full investigation, these deaths may be diagnosed as:
*Suffocation: When no air reaches a baby's lungs, usually caused by a block in the airway
*Entrapment: When a baby gets trapped between two objects, such as a mattress and wall, and can't breathe
*Infection: When a baby has a cold or other infection caused by a virus or bacteria that makes breathing difficult
*Ingestion: When a baby takes something into the mouth that blocks the airway or causes choking
*Metabolic diseases: Conditions related to how the body functions that can lead to problems with breathing
*Cardiac arrhythmias: When a baby's heart beats too fast or too slow and affects breathing
*Trauma (accidental or non-accidental): When a baby experiences an injury
Dr. Rick Goldstein, a leading SIDS researcher at Harvard University and Boston Children's Hospital, said despite these possibilities, SIDS is the leading cause of death in infants from one month to one year of age.
SUDDEN INFANT DEATH SYNDROME (SIDS):The National Institute of Child Health describes SIDS as a type of SUID where a child less than one year old dies suddenly and without explanation even after a full investigation that includes a complete autopsy, examination of the death scene, and review of the clinical history.
The National Institute of Child Health defines this as a type of SUID and a cause of death code used for vital statistics purposes to identify infant deaths that are a result of suffocation or asphyxia (blockage of the airway) in a sleeping environment. The NICH offers the following examples:
ACCIDENTAL SUFFOCATION AND STRANGULATION IN BED (ASSB):
*Suffocation by soft bedding: When soft bedding, a pillow, or a waterbed mattress blocks the infant's airway.
*Overlay: When another person shares the sleep surface with the infant and lays on or rolls on top of or against the infant while
sleeping, blocking the infant's airway.
*Wedging or entrapment: When an infant gets trapped between two objects, such as a mattress and wall, bed frame, or
furniture, blocking the infant's airway.
*Strangulation: When something presses on or wraps around the infant's head and neck blocking the airway.
According to Dr. Goldstein, although this cause of death is used increasingly, there is little to distinguish these deaths from SIDS beyond the preferences of a medical examiner or coroner.
REDUCE THE RISK OF SIDS AND SUID
ABC'S OF SAFE SLEEP
Experts largely agree the most effective way to reduce the risk of SIDS is by consistently practicing safe sleep. The Safe to Sleep campaign, first known as the Back to Sleep campaign, started in the 1990's and cut the number of SIDS deaths by 50 percent. During that time period, the National Institute of Child Health reported that the rate of back sleeping more than doubled.
The Safe to Sleep campaign promotes the ABC's of Safe Sleep. Your baby should always sleep ALONE, on its BACK, and in a CRIB. Experts say your baby can share your room but not your bed. Once they're old enough to roll over, it's OK if they change position. Your baby's crib should be bar with no blankets, pillows, bumpers or toys.
Doctor Mary Palmer at East Tennessee Children's Hospital said, "Children sleep better on their bellies, but it's a deeper sleep. So again, we don't know why children that sleep deep are more prone to die, but they are."
The Center for Disease Control provides ways to reduce the risk of SIDS based on recommendations from the American Academy of Pediatrics:
*Do not smoke during pregnancy, and do not smoke or allow smoking around your baby.
*According to the Metro Nashville Health Department, smoke exposure triples infants’ risk of SIDS. An infant exposed to
second hand smoke, or smoke from another person's cigarette, can increase risk of SIDS.
*Do not drink alcohol or use illegal drugs during pregnancy.
*Breastfeed your baby.
*Visit your baby’s health care provider for regular checkups. Your baby will receive important shots to prevent disease.
*Offer your baby a pacifier at nap time and bedtime. If you are breastfeeding your baby, you may want to wait to use a pacifier until breastfeeding is well-established.
WHEN DOES SIDS OCCUR? THE TRIPLE RISK MODEL:
A baby is most at risk for SIDS in the first six months of life. One theory attempts to explain when and how it occurs. The Triple Risk Model hypothesizes that three things must happen at the same time for a SIDS death to occur. First, a baby must fall in the critical development period when they're under one year old. Second, a baby must be exposed to outside stressors like secondhand smoke or unsafe sleep positions. Third, a baby must be vulnerable in some way. Perhaps the baby is already sick, it was born premature, or its serotonin levels are off.
CREATING A SAFE SLEEP AREA
The Centers for Disease Control and Prevention provides the following tips for parents and caregivers to create safe sleep environments.
*Place your baby on his or her back for all sleep times including naps and at night.
*Use a firm, flat sleep surface, like a mattress in a safety-approved crib, covered by a fitted sheet.
*Keep your baby’s sleep area (a crib or bassinet) in the same room where you sleep until your baby is at least six months old, or ideally, until your baby is one
*Keep soft bedding such as blankets, pillows, bumper pads, and soft toys out of your baby’s sleep area.
*Do not cover your baby’s head or allow your baby to get too hot. Signs your baby may be getting too hot include sweating or his or her chest feels hot.
KNOX COUNTY SUID STATISTICS
The Knox County Health Department reported that unsafe bedding and toys present in the sleep environment are nearly always a factor in sleep related death cases. From 2013-2017, 78% of the time, babies who died of SUID were not sleeping in a crib or bassinet. Around a third of the time they were not placed on their backs to sleep, and a little more than 40 percent of the cases involved bed sharing or sharing another sleep surface.
The Knox County Health Department offers a variety of program to encourage practicing safe sleep. You can visit its Strong Baby website or call 865-215-5170 to speak with a Safe Sleep Expert.
WHY DO THE SAFE SLEEP RULES CHANGE?
A lot of grandparents, older caregivers, or parents of older children may notice these rules seem much different than what they were taught. In years past, parents were told to use bumpers to protect babies from becoming stuck between crib railings. Bumpers are now considered dangerous. Parents were also taught that babies should sleep on their bellies or sides. Both practices are also now considered dangerous. It was also common practice to use sleeping wedges to keep babies in certain positions. Experts now warn against those devices.
So why do the rules constantly change? Dr. Mary Palmer said, "If we have five kindergarten classes worth of children dying every year in the state of Tennessee, then there's got to be more than know. So I would hope the recommendations are going to change and improve over time... You expect they should be different because you would hope people looking into these things would continue to do research to find more ideas about why do babies still continue to die despite our very best efforts. There must be more to know and more to do to keep these babies safe."
The practice of putting babies to sleep on their backs has been promoted my major child health organizations in the United States since 1992.
Dr. Palmer said ever-changing rules have the potential to create conflict between new parents and their parents. "Your relationship with the entire family is important but your care of your child is your decision," she said. "You learn why that's not okay and you have another discussion with your parent and you make a decision as a parent."
WHAT CAUSES SIDS? THE LATEST RESEARCH
Doctor Rick Goldstein is a leading SIDS researcher at Boston Children's Hospital and Harvard University. He runs Robert's Program , a diagnostic, research and support program in Massachusetts. He told WVLT News Anchor Amanda Hara that although a child who dies from SIDS may act healthy, there is a lot of evidence that they are vulnerable.
Dr. Goldstein said there's likely something happening in the brain or on a genetic level that makes a SIDS baby vulnerable to situations that other babies would be able to survive. His predecessor at Harvard, Dr. Hannah Kinney, found that there are decreased levels of serotonin in infants dying from SIDS.
Dr. Goldstein said that discovery was built on previous research involving mice and what happens when they lack serotonin. "We take mice and we set them up in chambers. We reduce the amount of oxygen and increase the amount of carbon dioxide in the chamber and the normal mouse has a stereotypical set of responses that are the auto resuscitation. Their heart rate goes up, they breathe faster, they arch, they yawn, they do a lot of things babies would do in that situation," he explained.
But when their brain stem serotonin was lowered in the second part of the experiment, the reaction was much different. "Then you take that same mouse and turn down the serotonin in their brain stem and they just lay there and die. That's the difference in an otherwise survivable situation between the child who does die and the child who survives those threats." Essentially, Dr. Goldstein said serotonin enables a healthy baby to react appropriately and recover.
He describes other research from his group on the hippocampus of the brain. "We've found 40 percent of infants who died from SIDS, in that region of their brain, they have changes in their cell architecture that's only been described in epilepsy. It raises questions about whether this is a first time seizure that's not survivable that's somehow related to it. We know that when parts of the brain are having a lot of seizures that there's a local effect on serotonin and the serotonin levels go down," Dr. Goldstein explained.
CAN WEARABLE MONITORS PREVENT SIDS?
The Neebo monitor is advertised to track heart rate and oxygen levels and notify parents if a baby is in distress of experiencing breathing problems.
While researchers like Dr. Goldstein are working to unravel the mystery of SIDS, the unknown is unsettling. Many parents are turning to products that promise to send alerts when a baby's vital signs seem alarming. Some of the monitors range in price from under $100 to more than several hundred dollars.
The Owlet it one of several wearable monitors on the market. The smart sock tracks heart rate and oxygen levels and sends an alert to a user's phone when something seems wrong. The Snuza Hero clips onto the diaper and promises to wake a baby if no abdominal movement is detected for 15 seconds. After five more seconds without motion, an alarm will sound. Neebo is another monitoring product. It looks like a watch for a baby and connects to a user's phone. The Neebo is advertised to track heart rate and oxygen levels and notify parents if a baby is in distress of experiencing breathing problems.
Dr. Rick Goldstein said there are no reported cases of a monitor saving a baby from SIDS, "There is no evidence of a life saved because someone intervened and the alarms went off sooner." However, he agreed the monitors are beneficial in other ways. He said they provide peace of mind for parents who have already experienced a SIDS loss by allowing them to walk away from the crib and get rest during the night.
Dr. Goldstein said it is possible for a monitor to save a child from something other than SIDS. That's why the Knox Blocks Foundation gifts Owlet monitors to at-risk babies, including those born premature or with heart conditions. Founder Elisha Palmer said in some cases, the monitors have alerted parents to heart conditions they didn't know about.
Other parents said the monitors provide peace of mind by sending an immediate alert of trouble. Brittanie Weaver said parents feel like they can at least try to intervene.
"I always tell people it’s not going to prevent, it’s not going to save your baby, it does not replace safe sleep practices. All this does is a mechanism to say, 'My baby’s in trouble, I can do something or try to do something about it,'" Weaver said.
UT'S Dr. Mark Gaylord demonstrates a device that could detect changes in breathing. The prototype is the result of a collaborative project with the university's bio-engineering department.
Doctors at the University of Tennessee are collaborating with the U.T. Bio engineering Department to develop a device they said can detect problems much faster than other products on the market. Neonatologist Dr. Mark Gaylord told WVLT News Anchor Amanda Hara that the small monitor fits into an infant's nose and detects changes in breathing.
If apnea, a more than 20 second lapse in breathing, is detected, the device sends a wireless signal to a sock worn by the baby. The sock then vibrates to rouse the infant, and simultaneously sends an alert to the parents.
Dr. Gaylord said the device has the capability of detecting problems much faster than other products because red flags like changes in breathing come much earlier than other signs of trouble like changes in heart rate or oxygen levels.
The product could be used for babies and adult apnea patients at home, eliminating the need for cumbersome wires and tubes. Clinical trials on the device should begin in the next year.
DOES YOUR CHILDCARE PROVIDER PRACTICE SAFE SLEEP?
Amanda Hara holds papers documenting the violation history for every licensed daycare in Knox County.
Just because you know the latest rules on safe sleep doesn't mean your caregiver does. WVLT News Anchor Amanda Hara pulled the violation history for every licensed daycare provider in Knox County and found countless safe sleep violations.
Details for some of the violations were alarming, ranging from an infant left asleep in a car seat for hours to babies put to bed in unsafe sleep environments.
Experts recommend that parents research daycare providers before enrolling. The state makes violation history available to anyone online. You can search each provider, based on county and zip code.
EAST TENNESSEANS TAKING ACTION
MAW's Cause, founded by Ben and Brittanie Weaver, honors their son Mason Archer Weaver who died of SIDS. The organization's annual 5k raises money for wearable blankets.
You don't have to feel helpless or hopeless about SIDS. There are a lot of ways to help raise money for research and support right here in East Tennessee.
The Sweaty Seven
Every year, physical trainer Sarah Van Sickle holds a group workout in Knoxville called the Sweaty Seven. She brings top trainers from all over the area, sets up exercise stations, and draws hundreds of participants. Each participant pays a fee which is donated to SIDS research in honor of Van Sickle's niece Lauren Grace, who died of SIDS.
Van Sickle said a big part of the day is about, "Reminding those moms who have lost their kids to SIDS, which is just so heart wrenching, reminding them we remember. We take that day to remember all the children who's lives were lost to SIDS. We see you, and you're heard, and you're child is not forgotten."
The next Sweaty Seven is in May. In five years, the fundraiser has raised nearly $10,000 for the American SIDS Institute.
Ben and Brittanie Weaver are the parent's of Mason Archer Weaver, who died of SIDS. They started MAW's Cause to raise money for sleep sacks which are then donated to Tennova Hospital. Join them October 28, 2018 at 3:00 p.m. for an annual 5-k to benefit the mission. Walkers and runners can enjoy the moderate hills of historic Norris. The registration fee will be used to buy 2,500 wearable blankets. The organization has other events planned throughout the year. You can learn more about them here.
The Knox Blocks foundation is holding a fundraiser on March 14th, 2018 at the Press Room in Knoxville. Emily Ann Roberts, a finalist on NCB's The Voice, will provide entertainment for the event. Proceeds will be used to purchase Owlet Monitors which are gifted to babies across the state and country. Owlet gives the foundation one free monitor for every one that's purchase. Follow this link to learn more about the Knox Blocks Foundation.
Still have questions about SIDS/SUID? University of Tennessee Medical Center Neonatologist Dr. Courtney Gutman joined WLVT News Anchor Amanda Hara for a Facebook Live where viewers received answers. You can watch that video here.