DAMASCUS — Samantha and Ken Holland of Damascus already had six children between them, so when Samantha gave birth to Preslee, both parents quickly knew something was wrong.
Samantha, 29, and Ken, 43, have been married 3 1/2 years, and Samantha’s pregnancy was a bit of a surprise.
“It wasn’t exactly planned,” Samantha said. “It kind of scared us both to death at first, coming from divorces, and we already had such a big combined family, but we welcomed it.
“Everything seemed normal with the ultrasound. We had no clue with anything being wrong at all,” she said.
Samantha gave birth to Preslee on Jan. 25 by cesarean section, and the baby wasn’t breathing at first. Hospital staff said she’d swallowed fluid and was having breathing problems.
A few hours later, Preslee was examined and declared healthy.
Samantha’s instincts told her something was wrong with her baby.
“I knew from the time we took her home,” Samantha said. “I kept saying her breathing was messed up. After we fed her, she would gag but not spit up anything. Ken and I would rush and get our shoes on, thinking we’d have to go to the hospital.”
“[Medical personnel] would brush us off,” Samantha said.
She said they told the couple Preslee’s behavior was normal.
“Having so many babies, I knew it wasn’t,” she said.
Samantha’s instincts were right. She said last week that after extensive testing, it is “highly likely” that Preslee has a neurodegenerative disorder, but more tests are being conducted.
“If this is it, and we’re praying [it’s] not, the life expectancy is two years,” Samantha said.
Samantha was desperate to find out what was wrong with her baby, and she called neurologists and took video of the “jerking” that Preslee did and sent the video to neurologists.
She said she was told it was a “hiccup” in Preslee’s nervous system.
An incident when Preslee was 3 months old made finding a diagnosis more urgent.
“One day I was picking up my other children from school, and … she let out a loud, high-pitched scream,” Samantha said.
“I could see her in the baby mirror. Her eyes were rolled back in her head,” and her limbs were jerking.
“I pulled over at Rogers Group in the middle of Damascus, called my husband, screaming, crying — I didn’t know what to do. I finally got my senses about me, put her in her car seat again and headed to Children’s Hospital as fast as I could.”
After tests, Samantha said she and Ken were told, “Everything is fine,” and that they could go home.
“I said, ‘No, we’re not going home. I know what I saw. We’re staying.’”
Preslee was admitted to the general pediatrics floor.
“We weren’t even there five minutes. They were just taking her first vital signs, and she went into a full-blown 17-minute seizure,” Samantha said.
Preslee was given seizure medication and stayed in the hospital until her symptoms were under control, but when the Hollands took her home, the problems started again.
At one point, she was up to 100 seizures a day, Samantha said.
Preslee can’t sit up and has trouble holding up her head, although that is improving as she is being weaned off a muscle relaxer. She rolled over for the first time last week, Samantha said.
“She can’t really use her hands; she can’t feed herself. There’s a lot of things she cannot do,” Samantha said. “She’s still stuck at a 2-month-old [stage of development],” despite being more than 7 months old.
“She’s just a little sweetheart, and you can’t put her down. She loves to be held,” Samantha said.
Preslee is on two medications, her mother said, and the baby formula has to be thickened to the consistency of honey.
“We hardly ever sleep. She chokes a lot at night. She sleeps right by me, in her bed,” Samantha said. “We alternate getting up and feeling her chest to see if she’s breathing.”
Samantha said that even though it is stressful on the couple’s 3 1/2-year marriage, she thinks Preslee’s illness has brought them closer.
The couple stay busy with their other children to keep their minds occupied.
Samantha had to quit her job at a state agency in Conway, and Ken works as an electrician for Nabco Mechanical and Electrical in Conway.
“Faith in God is getting us through, and praying that we’re going to get a miracle,” Samantha said.
Senior writer Tammy Keith can be reached at (501) 327-0370 or tkeith@arkansasonline.com.