Something was wrong. Two-week-old Darby Hendrickson refused to eat. His parents were baffled. There was no clear indication as to why; Darby had been born healthy.
“He cried for what felt like forever,” said his mother, TMC alumna Dana Hendrickson. Two hours later, a fever led Dana and her husband, TMC IT help desk coordinator Jason, to take Darby to the hospital, first to urgent care and then the emergency room. What looked like a seizure caused the doctors to run a CT scan. Darby’s brain was hemorrhaging.
“At that point, we couldn’t feel exactly; we just went into ‘what do we need to do?’ mode,” Dana said. “… After a couple hours of holding our baby and holding oxygen to his face, I finally realized that we could possibly lose him. It was terrifying.”
Two weeks, a hospital transfer, and a surgery later, Darby was discharged, but the follow-up appointments were not the end of the ordeal. At about six months, Darby developed infantile spasms.
According to the National Institutes of Neurological Disorders and Stroke, these seizures are a symptom of West Syndrome which “is characterized by infantile spasms, developmental regression, and a specific pattern on electroencephalography (EEG) testing called hypsarrhythmia (chaotic brain waves).”
Darby had already been diagnosed with cerebral palsy after his stroke.
The seizures began while Darby was being monitored due to having developed hydrocephalus, a condition which would later lead to a VP shunt being installed to drain the fluid from around his brain. After trying various solutions, the doctors had still not found a consistently effective way to stop the seizures.
“I remember praying and saying ‘God,’ – while he was having a seizure – I said, ‘God, please make this be the last seizure he has’… And it was… For many years he didn’t have any kind of seizure problems,” Jason said.
Though the seizures stopped, Darby’s development was hindered. While many children begin to walk and speak around their first birthday, Darby had done neither.
“We would ask him to point to certain things, and that was our first way of learning he could understand anything!” Dana said. “We had a shape puzzle and the first time that he put the shapes in the right spots, we practically cried. We had no idea he knew anything.”
Darby’s early childhood consisted of various forms of therapy from physical, speech, and occupational therapy to horse-riding therapy at Carousel Ranch. He started walking when he was 3-and-half years old and did not begin talking until he was 4.
The trouble Darby has had learning has given his parents a different perspective on his progress.
“The first time that he really started talking in a way that was more than just kind of babbling or just one word here or there… I just remember hearing him talking and hearing his little voice and just crying… He’s finally telling us what he’s thinking,” Jason said.
Jason and Dana decided to homeschool Darby after finding the public school system to be a bad match for Darby’s way of learning. As Dana has taught him, Darby has had difficulty with mathematics and logical concepts. In contrast, he has excelled in memorization and reading. Now 6 years old and in kindergarten, he is at a second-grade reading level.
“He’s constantly surprising me,” Dana said.
Given their circumstances, Jason and Dana’s relationship has fared well.
“I know that there’s other couples that have not done very well with having a special needs kid,” Jason said. “I think that because we have the Lord to lean on, that’s been the entire difference for us.”
Rather than weakening the bond between them, they feel they have grown closer because of Darby.
“I never knew how much I loved Jason. How perfect of a match he is for me. How we are complementary to each other,” Dana said. “When one us of is weak, the other is strong.”
By Caleb Chandler