Former Louisa native Kyle Bywaters and his wife, Geraldine, noticed something just wasn’t quite right with their three-month-old daughter, Lydia. She wasn’t the happy baby who couldn’t stop smiling like she had weeks before. Instead, she seemed upset and distant.
“It was alarming,” Geraldine said. “She was crying all the time and wouldn’t really eat. We were concerned about that.”
Days later, on Saturday, Nov. 1, the young family, who now lives in Winchester, found themselves sitting in the pediatric intensive care unit at University of Virginia Hospital in Charlottesville, pondering how to deal with the most unpredictable of diagnoses: infant botulism.
The disease, where bacteria forms and produces toxins inside the body, was previously unheard of by the family. Now, their daughter faced grueling weeks of recovery to fight a disease that affects just 100 babies annually in the United States.
“It’s a rare disease,” Geraldine said. “Why my baby? Why such a small child? No kid should have to be in the hospital at such a young age.”
The daily routine for Lydia would be intimidating for even the most mature of adults. Her nine days in the PICU were filled with numerous x-rays, visits by neurologists and insertions of breathing tubes.
“A round of people were coming in every single day,” Kyle said.
“We could barely cry,” Geraldine said. “It broke our hearts. We cried so much that it literally became numbing. We didn’t have tears in us to cry.”
And along with the uncertainty and treatments came the inevitable expenses. Though insurance will pay part of the bill, the Bywaters were still looking at a hefty bill. Due to the rarity of the disease, medications necessary for Lydia’s recovery had to be flown in from California with a price tag of $45,000, and weekly stays in the PICU don’t exactly have a reputation for being inexpensive.
To read the entire story, see the Dec. 19 edition of The Central Virginian.