Hayden Albertini is a typical nine year old. He loves building Lego and hanging out with his dog, Harley. His parents Megan and Nathan are proud of him; his brother Logan and sister Madi are fiercely protective.
What’s not typical about Hayden is the rare syndrome he lives with. In 2012, at age three, he was diagnosed with a rare form of severe refractory epilepsy with CSWS (continuous spikes and waves during slow sleep) in addition to frontal lobe epilepsy.
What does that mean? Hayden was having six different types of – and up to – 100 seizures every day. His condition also puts him at risk for Sudden Unexpected Death in Epilepsy (SUDEP). Megan puts it simply: at night, Hayden’s brain doesn’t stop. Every night his parents slept in shifts, always fearing the worst.
A crucial tool for diagnosing and treating Hayden is an EEG (electroencephalogram) which monitors electrical activity of the brain. He calls it his Robot Suit. Electrodes placed on Hayden’s scalp track his brain activity and record the results. It’s painless, but a challenge for kids since they must remain still. Currently at CHEO, many existing units are beyond repair, which can mean waiting times for tests.
Hayden’s condition affects everything from his development and speech to his behaviour and physical coordination. He has no fear or concept of danger; he will sometimes run off impulsively. The family is on the list for a seizure detecting service dog to help with this. Hayden is also susceptible to infections and has had several stays in CHEO’s ICU fighting for his life. Continuously he defies the odds.
2015 was rough. Hayden spent 288 days at CHEO. In 2016, after 26 medications failed and surgery was ruled out as an option because Hayden’s seizures were coming from too many areas in his brain, Dr. Erick Sell and the neurology team at CHEO determined his best option was a VNS (vagal nerve stimulation) implant. Referred to as a “pacemaker for the brain,” the implant in the chest delivers mild pulses of energy to the brain through the vagus nerve to reduce frequency and severity of seizures.
It was a game changer. Hayden now has about 25 seizures a day. “That’s still a big number, but before it seemed like it never ended,” Megan recalls. “Now, I can manage most of his seizures at home. We get a break to breathe, re-energize and be ready for the next one.” It translates into swimming lessons, playdates and glee club for Hayden.
A lot of time is still spent at CHEO with six to eight clinic visits per month. Hayden is also hospitalized up to five times every year. “We’re frequent flyers,” Megan says. “But it’s an incredible team. They listen to us, consult with us. We’re visiting neurology, ear-nose-and-throat, dermatology, dental, psychology, psychiatry,” she says with a grin. “We see them all!”
An EEG for Hayden means his team can track the activity in his brain and figure out what’s happening in the moment: the origin and type of seizure. This also dictates his treatment. Without proper equipment to detect the seizure pattern – there’s risk of further brain damage and Hayden losing years of progress. With seizures like Hayden’s it can even be a matter of life and death but his family stays positive. “We never give up,” says Megan. “We can’t.”
Hayden continues to make incredible strides like writing his name and recognizing letters and numbers. “We were told those things may never happen,” Megan says. “But with his hard work and incredible support at school and at home, help from CHEO and his Robot Suit, Hayden is unstoppable!”
