There was an early celebration of Thanksgiving recently at Madison County EMS Station 1 in Danielsville.
The occasion?
They were celebrating the life of now 6-week-old Rylee Steed, who has gained two pounds and grown two inches since her birth on Oct. 4.
It was just two days after that birth when such a celebration didn’t seem in the cards for little Rylee, who went into cardiac arrest just after her parents arrived home with her from the hospital.
She’d been born a healthy full-term infant at St. Mary’s Hospital, weighing in at 7 pounds two ounces and like all new parents, Ronnie and Natalee Steed were thrilled with their beautiful little girl.
Mrs. Steed said she noticed Rylee seemed a little weak before they brought her home, but was assured it was just because she was a little jaundiced, as many newborns are.
“I let her sleep for a while (after they got home) and then I tried to wake her up to breastfeed her and couldn’t get her to wake up,” Mrs. Steed said. She said little Rylee’s eyes rolled back in her head when she lifted her up and she looked as if she might be seizing.
The Steeds live north of Ila in an area with poor cell phone reception, so they both jumped in their truck with their baby and began to head toward Athens.
“I just drove,” Mr. Steed remembers, panicked and all the while searching for a signal. When he did get through to 9-1-1, it was to Jackson County 9-1-1 who transferred them to Madison County E-911.
Dispatcher Kay C Wilson answered the call, instructing them to pull into the nearby EMS station in Ila.
“It was startling to hear that it was a newborn baby in distress,” Wilson said. “I just tried to keep them as calm as possible and tell them where to go for help.”
Mrs. Steed said she just held her daughter to her chest and prayed for her not to die until they could reach the EMS station.
“At one point, I felt her leave me,” she said.
Paramedics Danny Scarborough and Lori Hope were having lunch at the Ila Restaurant across the street from the EMS station with Scarborough’s friend, Lucas Vendrillo, a Banks County EMT, when the call came in. They raced over to the family.
Vendrillo, who had only come by on his day off to work on Scarborough’s truck, was the first to reach Rylee, taking her in his arms.
“It was obvious she was in cardiac arrest,” Vendrillo said.
The team sprang into action, administering CPR with a bag valve mask.
Paramedic Lane Vandiver drove the ambulance as Scarborough, Hope and Vendrillo worked on Rylee in the back.
Scarborough said her blood glucose level was determined to be at 16 – a level not able to sustain life (anything below 60 is dangerous).
“We managed to get a small IV line in her arm and we prayed hard for that,” Scarborough said, and eventually they were able to detect a pulse, though she was still purple at that point.
“We kept giving her little bits of sugar to keep her alive,” Scarborough said.
Hope said by the fourth time they stuck her to check her glucose she gave a little kick of resistance, hiccupped and began to whimper.
“It was a wonderful sound,” Hope remembers. “We’re all very spiritual people and we’ve been through situations like that where there was not a good outcome, so we were really praying for this little one. God was surely with us that day.”
By the time they got her to the hospital she was coming around and turning pink again.
“The ER physician on duty when Rylee came in sent me an email and said there was no doubt that Madison County EMS saved that child’s life,” said John Sartain, the EMS liason with St. Mary’s Hospital.
Once she was stabilized at St. Mary’s, Rylee was transferred to Augusta Children’s Hospital where she was eventually diagnosed with a genetic disorder called LCHAD (Long-chain 3-hydroxyacyl-CoA dehydrogenase). LCHAD deficiency is a rare condition that prevents the body from converting certain fats to energy, particularly during periods without food (fasting), according to the National Institute of Health’s U.S. Library of Medicine.
Signs and symptoms of LCHAD deficiency typically appear during infancy or early childhood and can include feeding difficulties, lack of energy (lethargy), low blood sugar (hypoglycemia), weak muscle tone (hypotonia), liver problems, and abnormalities in the light-sensitive tissue at the back of the eye (retina). Later in childhood, people with this condition may experience muscle pain, breakdown of muscle tissue, and a loss of sensation in their arms and legs (peripheral neuropathy). Individuals with LCHAD deficiency are also at risk for serious heart problems, breathing difficulties, coma, and sudden death.
Mrs. Steed said the genetic disorder was discovered in 1989 and that Rylee is only the fifth or sixth child in Georgia to be diagnosed with it.
She said it is now believed that some children thought to have died of SIDS may have actually had LCHAD.
“Rylee will see a dietician and nutritionist to manage her diet for the rest of her life,” Mr. Steed said.
For now, Rylee is fed a special formula through a nasogastric tube in her nose that keeps her glucose level stabilized. The solution was provided to them by Emory Hospital.
As she gets older, Mrs. Steed said they will work with specialists to determine what foods their daughter can and cannot eat.
“It won’t be anything fried or greasy, the doctors have said it’ll be the heart healthiest diet possible,” she said.
And Rylee is certainly thriving on her special diet, as her most recent visit to her pediatrician last week showed.
The Steeds said Madison County EMS kept up with Rylee’s progress and expressed continued concern for her while she was hospitalized.
As a token of appreciation, Rylee’s parents, along with her grandparents Ronnie Sr. and Linda Steed, brought supper to the Danielsville EMS station to meet with the people who’d saved their daughter’s life, this time under much happier circumstances.
Scarborough, Hope, Vendrillo and others took turns holding and passing Rylee around as she gurgled and cooed (and occasionally cried), much to their obvious delight. The Steeds said they wanted them to see her thriving, and to thank them in person for saving her life. Scarborough said outcomes like that are what the job is all about for he and his co-workers.
“We can’t possibly express in words how much we appreciate what the EMS crew did for Rylee, and for us, that day,” Mrs. Steed said. “We will be forever grateful.”
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