Doctors didn't think Jesse would live out the week. But he survived and remained in neonatal intensive care for nearly three months. It was another two months before the Coopers could hold their son unfettered by tubes. Finally, on December 8, 1987, the couple took Jesse home. They had been given no diagnosis, but they left the hospital that day with antiseizure drugs that had been prescribed because an electroencephalogram, a test of brain wave activity, had detected seizure activity...
By the time he was 3, Jesse was having intense tonic-clonic seizures—episodes marked by stiffening of the muscles followed by jerking movements—several times a day despite medication...
Despite his physical limitations, Jesse proved to be intellectually gifted, making the honor roll nearly every semester. He wrote poetry, played video games, and used a computer to speak with friends and classmates. When his intelligence was assessed through the use of an adapted computer, Jesse scored in the 99th and 75th percentiles on different parts of the test...
By all measures, Jesse was thriving in his senior year of high school, but his seizures continued unabated—a constant worry for him and his parents. In fact, Marianne was haunted by the idea of waking up one morning to discover that Jesse had died in his sleep from a nighttime seizure. And then, one cold January morning in 2005, Marianne's worst fear became a reality. Her 17-year-old son had died from sudden unexpected death in epilepsy (SUDEP).
SUDEP occurs at a rate of 3 to 4 per 1,000 people with treatment-resistant epilepsy, says Daniel Friedman, MD, an assistant professor of neurology at New York University Langone School of Medicine and an expert in SUDEP. The overall rate of SUDEP in children under the age of 18 is very low—about 2 per 10,000 children. “But people whose epilepsy began before the age of 18 are at a higher risk for SUDEP in adulthood,” he says. “Death typically occurs between the ages of 20 and 40.”
The Coopers were devastated and nearly undone by grief. “The threat to both Chris and me—and perhaps to other grieving parents—was the danger of grieving alone, each partner nursing a private agony and perhaps blaming the other for not experiencing the same grief at the same time,” says Marianne, who tried to remind herself that grief is different for everyone. “Grief is like a sniper. It comes out of nowhere, and neither Chris nor I expected the other to be at the receiving end of that shot simultaneously.”
Two years after their son's death, the Coopers launched the Jesse Cooper Foundation, a small nonprofit group that supports two Massachusetts organizations, the Jesse Advocacy Fund and AccesSportAmerica. The Jesse Advocacy Fund, housed within the Federation for Children with Special Needs (http://fcsn.org), is an educational group that helps low-income bilingual parents of children with disabilities hire advocates to fight for full inclusion in the classroom.
AccesSportAmerica (http://accessportamerica.org) uses sports and physical activity to improve fitness and overall functioning in children with disabilities. “We keep it at a local level because we believe it's easier to see results through direct involvement,” says Marianne. In its eight years, the foundation has helped nearly 300 families.
Also in 2007, when Jesse would have turned 18, Marianne got a tattoo on the inside of her wrist of her son's name with an infinity symbol beneath it. She considers it “an exuberant shout, a testimony to Jesse's being in the world, an affirmation of his own wish to proclaim it, and a reminder that I was and will be his mother every day for the rest of my life.”
In his last poem, “I Am,” written in 2004, Jesse wrote: “My best dream is to fly, soaring through the air.” Through their organization and advocacy work, the Coopers are helping other children like Jesse to soar as well.
Despite being a leading cause of premature death in people with epilepsy, SUDEP was a relatively understudied—and controversial—phenomenon for many years. In the past, some physicians argued that the risk of SUDEP was so low that mentioning it would cause parents and caregivers undue stress. Today, advocacy groups and families who have lost relatives to SUDEP are raising public awareness and encouraging openness about the phenomenon, even helping to spearhead further research. Professional organizations like the American Epilepsy Society (http://aesnet.org) suggest that any conversation about epilepsy with parents and caregivers should include a discussion about SUDEP.
Seizures, in general, can sometimes cause a loss of consciousness. However, Dr. Friedman says, tonic-clonic episodes almost always cause post-seizure unconsciousness, which may make it difficult for the patient to breathe properly and maintain heart rate and blood pressure. “If tonic-clonic events occur while the person is asleep, you have a potentially deadly situation. The reason is that post-seizure, the brain's higher cerebral function is impaired, so it lacks the appropriate arousal reflexes required to wake the person up.” In very rare circumstances, this cascade of events, if uninterrupted, can lead to death.
To avoid SUDEP, older children must understand and carefully manage their seizure triggers. “This means taking medications as prescribed and limiting or eliminating the factors that lower the seizure threshold, such as not getting enough sleep or ingesting drugs or alcohol,” says Dr. Friedman. He adds that research has not yet established a clear link between diet and SUDEP, and that patients may experience their own idiosyncratic and individualistic triggers...
Parents and caregivers can learn more about SUDEP through the SUDEP Institute at http://epilepsy.com/sudep-institute.