LYNN HAVEN — A constant sputter.
It’s the sound of baby William Snow’s oxygen concentrator, which is connected to a tracheostomy tube attached to a hole in the infant’s neck.
The sputter — not the gentle cries of a 5-month-old baby — is one noise 28-year-old Kimmy Snow and her 30-year-old husband, Ben, hear every day.
“In order for him to be heard over the machines he has and over the worrying, it’s hard,” Kimmy Snow said. “If you sleep, it’s not a restful sleep; you’re worried you’re going to miss something.”
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William was born with a cleft lip and pallet, a split in the upper lip and roof of the mouth. The birth defect affects about 1 in 1,000 babies born in the U.S., and without corrective surgery often leads to feeding, hearing, dental and speech problems.
A garnet-colored Florida State University onesie fitted his 8 pound, 3 ounce body perfectly Friday morning and didn’t interfere much with the tubes — one for feeding, one for pulse monitoring and the other for breathing — that dangled from his body.
The infant weighed 3 pounds, 14 ounces at birth, with rocker bottom feet and single palmar creases in his hands — physical deformities thought to be associated with abnormal chromosomes.
“He’s still kind of developing his personality, but he’s a fairly happy child,” Snow said. “It’s still a lot of learning his traits. … making sure he has all of these opportunities that every baby should have, that he may or may not get.”
Living a healthy life was one such opportunity Snow said the Medicaid system denied her son after his birth.
“It has been a fight … to get to this point, to get any care for him,” Snow said. “If you make money, you don’t get to participate” in Medicaid programs.
“But people who make money aren’t guaranteed a perfect child,” she added, “so why should we have any less of a chance to get assistance?”
The family couldn’t afford to pay for a 24-hour nurse to administer medical procedures on William, who sometimes gets fidgety and clamps down on the oxygen passage, blocking his breathing airway.
Nurses run $32 to $42 per hour and along with $150 a month for medical equipment rental, the family can’t afford to hire one.
The hospital did train the family how to “bag”— pump air — and suction mucous out of his trach, but a person who is medically trained is better qualified to do it, said Patty Frettwell, Snow’s aunt who has been with the family for the past month and soon will leave for home in Minnesota.
“Having to see some of the episodes was very frightening,” she said. “It’s hard to see a little one go through that.”
What’s to come
A nurse was assigned to William for the first time Thursday evening. Snow said the condition is that each month William has to rack up $5,000 in medical costs and Medicaid would pay for a nurse to provide care for him.
The nurse will be with William for the next 60 days, but after that, the Snows will again alternate sleep hours to make sure an eye is kept on the infant throughout the day and night.
“There is no way we can pay for a 24-hour nursing assistant,” Snow said. “We’re not the only ones who needed help, but because we chose to better ourselves in some way, our baby has to suffer.”
For now, the debt will have to do. If she has to choose between debt and the baby, Snow’s taking William hands down.
“We’re very faith-based and we believe he’s still here for a reason,” she added. “Even if we only have tomorrow with him, he’s touched so many people and we know that.”