Months of uncertainty and the search for answers turned McMaster Children’s Hospital into a home away from home for little Tristan and his parents, Heidi and Rob. But through it all, one thing remained constant for his mother Heidi, “there’s no other place I’d rather be.”
Heidi’s connection to McMaster Children’s Hospital began before Tristan was even born. Six months into her pregnancy, an ultrasound revealed genetic markers that required further investigation. Testing and routine monitoring at the Hospital followed, though the exact nature of Tristan’s condition remained unclear.
Tristan was healthy and squalling when he arrived on September 16, 2017, but his early days were complicated by clubbed feet that required immediate attention at McMaster Children’s Hospital’s Fracture Clinic.
However, the most life-changing moment for Tristan’s family came when he was four months old and began having seizures. Heidi vividly recalls how, despite initial dismissals at her local hospital, she trusted her instincts and took Tristan to McMaster Children’s Hospital’s Emergency Department. There, her concerns were validated within hours.
A life-changing diagnosis
“I was terrified,” recounts Heidi. “But at the same time I knew that I’m in the best place possible, and the doctors and all the nurses, they care and they make you a top priority.”
An MRI revealed Tristan had polymicrogyria, a condition in which the brain develops too many folds, affecting vital functions. The condition affects each person differently. For Tristan, polymicrogyria affects his oral-motor function including speech, swallowing and breathing. The seizures were a direct result of this condition, which also caused cerebral palsy and global developmental delays.
“It was a life-changing day,” Heidi recalls.
While the diagnosis was daunting, Heidi and her family felt reassured by the dependably compassionate and expert care provided at McMaster Children’s Hospital.
A team that cares
Tristan’s care team at McMaster Children’s Hospital includes neurologists, surgeons and other specialists who have worked collaboratively to address his complex needs. “Everybody works together. The doctors talk to each other, which has been amazing,” Heidi shares. From managing his seizures to performing surgeries for his tonsils, adenoids and hips, the Hospital’s team of experts in every field of pediatric health care have been there every step of the way. “They’re always focused on making Tristan as comfortable as possible. Everybody wants the best for him and they want to see him thriving.”
Sometimes, the journey of helping Tristan flourish was challenging. Over time, Tristan’s limited oral function made it increasingly difficult for him to gain weight and take medication. But Heidi and Rob were reluctant to move him to a gastronomy tube (g-tube). A g-tube is a medical device inserted through the abdomen directly into the stomach to provide nutrition, fluids and medication to people like Tristan who cannot eat or swallow by mouth.
Initially, Heidi was apprehensive about the procedure and administering tube feeding for her son, but she was also realistic about what was needed to improve his wellbeing. She and Rob had a long conversation with the surgeon who would install the g-tube. They received training on how to use and clean it and were assigned a nurse to support them anytime they ran into trouble, day or night.
With the g-tube, Tristan quickly gained weight, improving his health and happiness and affirming to Heidi that they had made the right decision. “Not all changes are bad. That was a terrifying one but now that we have it, I couldn’t imagine life without it,” she says.
Tristan’s spirit is unbreakable. He’s always smiling, giving high-fives to his doctors and eager for new adventures, showing everyone what he’s capable of – including, most recently, skiing.
“He loved it. He was over the moon,” Heidi beams, talking about the sit-ski program Tristan was finally able to join after a two-year wait.
Heidi credits the team and Hospital for their role in Tristan’s achievements. They genuinely care about him and celebrate every success with us, she says. “When we walk into the hospital, we know we’re in the best place possible.”
Changing lives through generosity
Behind every story like Tristan’s is the generosity of donors who support McMaster Children’s Hospital. Donations enable the hospital to invest in advanced technology, specialized training and innovative treatments that improve the lives of children and their families.
From the equipment used to diagnose and treat Tristan’s condition to the multidisciplinary team that coordinates his care, donor funding has played a critical role. “I feel extra lucky that we’re just blessed to have this care and to have everybody want the best for your child and just to see them thrive,” she says.
Every year, Heidi and her family channeled their gratitude into action by hosting Tristan’s Fall Fair, an annual event that raises funds for organizations that have supported Tristan’s journey. What started as a small first birthday party has grown into a large community celebration at their family farm, attracting dozens of attendees. Last year, the generosity of Tristan’s friends, family and neighbours went to support MacKids.
Heidi explains, “our friends and family are so, so generous, and then it just infectious, right? It all started for Tristan, and while it’s still about Tristan, we’re able to help other kids like him too.”
Heidi and her family remain optimistic about the possibilities that lie ahead, inspired by Tristan’s determination and the unwavering support of McMaster Children’s Hospital. Together, they are eager to put every opportunity in front of Tristan and let him show everyone what he can do. And he wants to do it all.