Like his father, Damon Arbuckle is a huge Beatles fan. At just four and a half years old, Damon also loves to dance and play. While this may not sound unusual, in Damon’s case it’s a miracle.
When Damon’s mother Shirley was eight months pregnant, she started having sharp abdominal pains. At first, doctors at her local hospital suspected appendicitis and removed her appendix, but the pain continued. Doctors then suspected Shirley had pneumonia. She was put on antibiotics and a short time later, transferred to McMaster University Medical Centre. Several days later, Damon was born.
The delivery went smoothly and although Damon was premature, he still weighed more than six pounds. In spite of his good health, doctors kept Damon and Shirley in the hospital for observation.
Damon’s plight began a few days after his birth, when he experienced trouble breathing. On suspicion of pneumonia, Damon was taken for an X-ray. During the procedure, he stopped breathing twice and had to be resuscitated both times. He was immediately transferred to the Neonatal Intensive Care Unit (NICU) at McMaster Children’s Hospital (MCH).
The next day, he had his first seizure. Physicians later confirmed Damon had a virus that had caused an infection in his brain. While Damon recovered in the NICU, his brain was monitored using ultrasound. The first ultrasound was normal, however, the second showed ‘shadows’ in his brain which indicated damage to his brain tissue.
The prognosis for Damon was unclear – doctors couldn’t predict how this would affect his physical or cognitive abilities in the future. There was also an 80-90 per cent chance Damon would develop cerebral palsy and a good possibility he might never walk.
Damon was followed closely by the Growth & Development clinic at MCH, underwent physiotherapy weekly, and seemed to be developing well. When he reached eight months, however, Shirley noticed his vision wasn’t quite right – he didn’t have the ability to track or follow something with his eyes. Tests confirmed the worst – Damon was legally blind.
During one of his vision tests, a technician picked up what turned out to be a minor seizure. Shirley realized that Damon had had them before, but she had not recognized them as seizures. Damon’s pediatrician consulted with Dr. Brandon Meaney, a pediatric neurologist at MCH who sent Damon for an EEG, a recording of electrical signals in the patient’s brain.
Dr. Meaney diagnosed Damon with infantile spasms, a seizure disorder also known as West Syndrome. It may have been caused by the infection he had at birth, but that cannot be confirmed. Infantile spasms are difficult to diagnose and treat, and therefore the prognosis is not optimistic. Although children usually outgrow infantile spasms at the age of three, the condition then typically evolves into a different kind of seizure syndrome.
Damon was put on an anti-seizure medication and responded well. After the first dose, Damon was seizure-free for nine months. He was then taken off the medication and went five months without a seizure.
One Saturday morning, however, Damon had a major seizure in his crib. His parents rushed him to the emergency department at their local hospital. Fortunately, brain scans showed this seizure didn’t result in any lasting damage to Damon’s brain. Dr. Meaney put him on a different medication and he then went two years without having another seizure.
Since then, Damon has had just one seizure.
Although he is still monitored by Dr. Meaney every six to nine months, Damon can walk and is progressing well in terms of his development. Because of low muscle tone, he wears braces on his legs to make walking easier. His speech is improving by the day, and while he has some cognitive delays, there is still time for Damon to catch up.
“Damon is definitely not a quitter,” said Shirley. “Most infants who contract the viral infection Damon had do not survive. But Damon beat the odds and continues to do well. We’re very, very proud of him.”