The thought of a baby dying unexpectedly is hard for any parent to fathom but the reality is, it happens. Sudden Infant Death Syndrome is the leading cause of infant mortality between one month and one year of age in the United States.
“If you can figure out why the baby died, it’s not SIDS,” said UT Health Northeast Pediatrician, Dr. Monique Mills.
It’s a medical mystery that is often called a diagnosis of exclusion, a cause of death that is still unexplained after thorough investigation.
“It’s the conversation about the risk factors and what you can do to decrease the risk of your infant dying from SIDS,” said Dr. Mills.
According to medical professionals, SIDS has similar risk factors to other sleep-related infant deaths, including suffocation. The message to parents has been the same since the Safe to Sleep campaign was launched in 1994.
“The current recommendation by the AAP is for newborns up to age six months to sleep in their own bed, a crib or bassinet, separate from the bed of their parents or caretaker, but in the same room with them,” said Dr. Mills.
It’s a topic many parents know of well, co-sleeping. Not only do they recommend an infant to sleep on their own, by they say babies should always be placed on their back on a firm mattress, free of pillows, quilts and stuffed animals.
“Some people think that when babies are on their tummy, cuddled up and asleep, that their respiratory drive center of their brain goes so low and so slow, that it just turns off,” said Dr. Mills.
While risk factors are key, Dr. Mills said SIDS is a diagnosis where doctors have to tell parents ‘I don’t know,’ a statement that can be hard for parents to swallow.
“To me, the fact that she’s a pediatric nurse, if anybody would have known what to do, it would have been Traci,” said Jennifer Carson, the Executive Director of the Children’s Park of Tyler, a place our community celebrates and honors the lives of Children.
She’s talking about Traci Standifer, a woman who knows the feeling of losing a child to SIDS.
“It’s different when you lose a child that’s maybe older, because you have memories of that child. When you lose a baby, you don’t have a lot of memories, but you have a lot of dreams,” said Carson.
The two met when Traci came to Jennifer’s support group, Glory Babies.
“Glory Babies provides a safe place for people to come and have the opportunity to just be where they are and just walk through their own individual grief journey,” said Carson.
She said it’s a journey that never ends.
“Normal, healthy delivery. C-Section, no problem. He was great, he was healthy, doing well, growing. He was 7 pounds 8 ounces when he was born. He was perfect,” said Standifer.
It has been 13 years since Traci lost her 25 day old son, Kolton.
“He wouldn’t sleep in his crib. I was asleep on the couch on my back and he would sleep in the crick of my arm. Just, the next morning he was gone,” said Standifer.
The hardest part for any mother to understand, babies who die of true SIDS are gone in the blink of an eye with no explanation.
“I did everything I was supposed to do,” she said. “I went to the doctor, I ate right, I did everything I was supposed to do. He was perfect, he was healthy, he was growing.”
Standifer said she’s thankful she worked very closely with a pediatrician at the time.
“I remember answering the phone and expecting her to say ‘I’m sick I’m not going to be at work today’ and she said ‘Kolton, I think he’s gone,'” said ETMC Pediatrician Dr. Michael Austin.
Dr. Austin said he vividly remembers the day it happened and the following weeks.
“When the autopsy report came back showing he hadn’t suffocated, that was a big deal. He died in her arms as if he would have died on a bed,” he said.
While SIDS is statistically rare, it does still happen. The State of Texas saw more than two-thousand infants die before reaching their first birthday within the last ten years.
“They’ve been grouped more than you’d think, it’s always been strange to me,” said Dr. Austin. “We had, around the time that Traci lost Kolton, there were another one or two within six months of that. I went six or eight years and had a couple more, then the most recent one was about two years ago.”
Through the grief, Traci said helping with the Children’s Park of Tyler gave her purpose and confidence to know little Kolton will never be forgotten.
Parents can engrave a stone to celebrate or honor their children, no matter the age, at the Children’s Park of Tyler.