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Wednesday, Aug. 31, 2016

Family hopes to spread word about SUDC

Sunday, May 20, 2012

Levi Collom is pictured playing in the water play exhibit, Kim's Secret Water Garden, at The Discovery House in Cape Girardeau. At 3-1/2-years old, the Benton preschooler died of unknown causes March 18.
(Submitted Photo)
BENTON -- On the morning of March 17, Levi Collom woke up at his home in Benton with a slight fever of around 100 degrees.

"We treated him with Tylenol and Motrin, and he started feeling better," said the 3-1/2-year-old's mother, Ellie Collom.

Levi; his mother; his father, Glenn Collom; and his big sister, Victoria Collom, went to Chick-Fil-A in Cape Girardeau for lunch.

"We ate, and he played in their indoor playground for two hours," Mrs. Collom said. "He had the biggest time."

The family stayed, and the parents watched as their children played, Mrs. Collom said.

"We left and went home, and actually my daughter and I left the house. Glenn was there with Levi, and he was playing in the back yard." Mrs. Collom recalled.

Levi was put down for a nap.

"After about an hour, I went in there and asked him if he was ready to get up," Glenn Collom recalled. "He said: 'No, Dad. I'm still tired.' I went downstairs and heard a noise and it sounded like him getting out of bed. In about a five- or 10-minute time frame, I went back up there and he wasn't breathing."

Collom tried CPR on his son and called 911. Levi was transported to a Cape Girardeau hospital, where staff worked on him for hours.

"They actually got his heart beat back, but it was medically induced," Mrs. Collom said.

Her husband added: "They never could get his lungs to work again."

However, Levi was transported to Cardinal Glennon Hospital in St. Louis, where staff worked hours to revive Levi. He was pronounced dead about 6 a.m. March 18.

"It's just so tragic," Mrs. Collom said. "Your body just kind of goes into survival mode, shock."

The doctor in St. Louis told the Colloms they did everything they could to save Levi.

"She said: 'I have a 2-1/2-year-old. I wouldn't have done anything different,'" Mrs. Collom said.

In the meantime, the Colloms are still waiting for the full autopsy report on their son.

"Levi was a healthy child," Mrs. Collom said. "He wasn't sick. He had one febrile seizure when he was 1-1/2 years old."

Febrile seizures are convulsions brought on by a fever in infants or small children.

"Febrile seizures aren't alarming or concerning, but to us it was because Glenn used to have seizures," Mrs. Collom recalled. "The normal protocol for the doctor is to say there's no concern in a lot of cases."

However, Mrs. Collom noted a preliminary study published in the June 2007 Pediatric and Developmental Pathology, looked at five cases of SUDC in toddlers who died in their sleep. Four of the children either had history of febrile seizures or a history of febrile seizures in their families.

Collom said she learned about this possible link after searching online and finding The SUDC Program. SUDC stands for Sudden Unexplained Death in Childhood.

"It's affiliated with SIDS (Sudden Infant Death Syndrome), but SUDC is for children 1 year of age to 6 years who die unexpectedly," Mrs. Collom said.

In contrast, SIDS occurs before a child's first birthday.

"There's a lot of people who don't know about SUDC," Collom said.

His wife agreed.

The online community for SUDC has about 500 members and offers a support group for families whose children die suddenly without explanation.

"The people have been wonderful. They've taken steps to talk to the medical examiner for us and talk to the coroner to find out what the process is to get the results back to us because as a family, you don't want to do that," Mrs. Collom said.

Plus, the services are free to the families, Mrs. Collom said.

"I've been on there with a lot of the other moms, and it's the same story of how (Levi and) their children passed. They just wake up with a fever, and parents give them Motrin or Tylenol. The fever is not enough to be concerned."

Even if the medical examiner finds there's an answer to Levi's death, SUDC is still there to support her family, Mrs. Collom said. If the autopsy report comes back with an unexplained cause of death, SUDC will redo the research and study family history to see if anything is comparable, she said.

The Colloms said they realize knowing why Levi died won't bring him back, but they say it could possibly help another family. Researchers could get that much closer to finding out why or how to prevent it, the parents said.

"Strange things happen," Collom said recalling what a good boy his son was. "This past Christmas was Levi's last Christmas. We probably bought three times what we should have."

His wife agreed.

"I don't know why, but we just did. We didn't feel bad about it either," Mrs. Collom said.

The parents went on to say they got Levi the Batman Cave he wanted, but then one of them would be out and see another piece that went with the set and got that.

"You've got to have the car, the plane, the helicopter and boat," Mrs. Collom said.

And then there are the action figures that go with it, she added.

"What it came down to was he got every last thing for this Batman Cave," Collom said. "And it didn't bother us a bit."

Looking back, the parents said they have no regrets on their out-of-the-ordinary splurging on their son's Christmas gifts.

"I sure am glad he got everything he wanted," Mrs. Collom said.