When he was four, Ben was diagnosed with Takayau’s Arteritis, a rare condition in which his blood vessels are inflamed and impact blood flow. This causes pain in the areas of his abdomen, kidneys and legs and without treatment and careful monitoring, it could put Ben at risk of stroke. The diagnosis was scary and overwhelming for his parents, Shannon and Tyler, who had not previously heard of this condition and worried about the complications and risks as well as Ben’s future and quality of life. It meant lots of hospital visits for Ben because he would require regular IV immunosuppressants.
However, it was because of his diagnosis that Ben met someone his mom calls “one of his favourite people on Earth” – Child Life Specialist Cathy Smith. From the first time he was at the hospital, Cathy incorporated distraction techniques and things that would lessen the fear and pain into Ben’s care. From bringing him toys and play-dough to playing games with him on an iPad during appointments, she helped shape his perception of the hospital in a positive way and reduce nervousness about pokes and medical procedures early on. Ben’s family learned these techniques and others – including numbing cream to freeze his skin before a needle and “Poke Cards”, which meant he got to pick something from the treasure box after every 10th poke – were part of a bigger strategy called Commitment to Comfort. Cathy even appointed Ben the “leader” of the care team, which also happened to involve his doctors, nurses and family. Shannon says Ben gradually grew more and more confidence and felt like he could be in charge of and advocate for his own health – something she is so grateful he will carry with him into adulthood.
Ben knows he is a superhero, because superheroes defeat the bad guys and he defeats the needles. He has come so far since those early days and has learned so many coping techniques for pokes that he doesn’t even need the freezing cream anymore. Shannon and Tyler are so grateful for the Commitment to Comfort program and how much it has helped turn something that started so scary into something that is manageable and even empowering for their son and their family.
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