TAYLORVILLE - The Christmas tree in Lisa Horn's living room shimmers with glittery white tinsel, SpongeBob SquarePants candy canes and a motley assortment of homemade ornaments crafted by tiny hands.
Beneath it, her three boys' stockings wait for eager hands to pry them open on Christmas morning. The smallest one is pale blue and reads, "Baby's first Christmas," but a recent near-tragedy almost robbed the family of 3-month-old baby Kolton, and nobody can definitively say why.
In late October, Horn's sister-in-law, Christen Kennedy, lost her baby to Sudden Infant Death Syndrome, or SIDS.
"She put the baby to bed and then when she woke up, she was kind of wondering why the baby wasn't waking her up because he always did," Horn's mother and both babies' grandmother, Marie Kennedy, said. "And she went and grabbed him and he was already turning blue."
Kennedy's daughter-in-law started CPR, but it was too late.
"And then, six days later, this one did the exact same thing," Kennedy said gesturing toward Kolton, who was fussing on his mother's lap.
Exhausted from the emotions of the recent death and the constant worry she faced with her own new baby at home, Horn took a nap one afternoon just a week later.
"After the funeral, I was just a nervous wreck anyway, so I was just tired, very tired," she said, explaining why she dozed that day.
It wasn't until her 5-year-old son came in to wake her and she looked down at Kolton that she noticed the infant wasn't breathing.
"His color was changing," Horn said. "He was real pale. He wasn't blue, so I was trying to wake him and running around, and I called 911 and started CPR on the phone."
A volunteer from the fire department arrived on the scene soon after, and the ambulance took them to the hospital. Horn called her mother and her husband, Michael Horn, and they all met at the hospital in Taylorville before Kolton was transferred to Decatur.
"That's a nightmare," Horn said of having to resuscitate her own baby. "I had never had to call 911 in my life until then, but it's like you don't even think about what you're doing."
Once Kolton was in Decatur, the Horns said doctors ran a battery of tests, and their best explanation was that he had fallen into a SIDS-like state that was interrupted by his mother.
"It's kind of like they just fall into a deep sleep and their brain forgets to tell them to breathe because they're sleeping so hard," she said.
Horn's husband said the doctors ruled out true infant sleep apnea, and therefore Kolton did not qualify for a high-tech, portable heart and breathing monitor prescribed by his doctor. A physician advised the family to try a commercially available monitor called the Angelcare Monitor, which monitors a baby's slightest movements through a pad placed beneath the mattress.
The night Kolton left the hospital, his family desperately scoured the area to find one of these monitors they could take home with them. They ended up calling and finding one left on the shelves at a specialty store in Springfield, where they convinced the managers to stay open until they could get there to pick it up. They didn't trust themselves to let him sleep without it.
Now the device has its permanent home beneath Kolton's mattress, picking up even the slightest movement of his breathing. If he stops moving for 10 seconds, it sounds a warning beep, and if he remains motionless for 20 seconds, an alarm sounds.
"It's a terrifying experience," his father said of the whole ordeal. "It's really been hard on me and my wife."
Horn said the family has had a hard time feeling safe lately because of the fear Kolton could stop breathing again and the uncertainty as to why it happens.
"My wife doesn't hardly sleep at all," he said. "She's exhausted."
Horn said his son often seems as if he's doing fine.
"He's growing," he said. "He's smiling."
But the monitor still goes off every couple of weeks. Usually, the warning beep is enough to startle Kolton awake, and his parents rarely are not already at his bedside when the alarm sounds. They plan their lives around times they can both be around. And Lisa Horn has moved from the couple's bedroom to sleep on the living room couch every night.
"I've been in the living room for three months," she said.
St. Mary's Hospital pediatrician Dr. Samir Patel said SIDS and infant sleep apnea are very controversial topics because very little is known about their causes or relationship. He said babies who have had a sibling die of SIDS are more prone to SIDS themselves, and there is some correlation between prematurity and infant sleep apnea, but Kolton doesn't fall into either of those categories.
Apnea monitors, which are considered medical devices, are available if the baby exhibits some form of apnea or if the baby exhibits a strong family history of SIDS, Patel said, but for those who don't qualify, monitors such as Kolton's Angelcare Monitor are sensitive enough to create a degree of peace of mind for some parents.
"It's really helped many of my parents who've turned to that monitor," he said.
For now, the details of Kolton's condition remain a mystery, and without health insurance, his family is left to wait and wonder whether it will take another emergency to provide them with the answers they so desperately need to sleep soundly again.
"Now our whole life has changed," Michael Horn said. "It's upside-down, and there's nothing we can do. We still want answers, and they can't give you any."
agetsinger@herald-review.com|421-6968
Posted in Lifestyles on Wednesday, December 17, 2008 12:00 am Updated: 2:33 pm. | Tags: Family, Health
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