Julian and his mother were initially introduced by a social worker to the Children’s Organ Transplant Society when they moved back to British Columbia. Julian’s transplant experience has been an intense medical journey. At just one-month-old, he was put on the Berlin Heart—a ventricular assistance device that provides mechanically operates the heart. Only two months later, Julian received his heart transplant. While the procedure itself went smoothly, post-op complications included a stroke and seizures. Julian’s mother, Jeannine, endured setbacks as she could not go back to work and had to quit going to university. She tried to get Julian into child care, but it was extremely difficult to find a place that would accept him with a liable medical condition. As a result, she had to go on income support, making financial matters an additional stressor in an already emotionally and physically stressful time. However, Jeannine ended up getting a job as an Apprentice and shared some empowering takeaways from her experiences.
When asked about her growth, she answered by stating the importance of advocating for Julian and herself. In the midst of being a single mom and undergoing a life-threatening medical journey, she realized that she needed to speak up for her family. Now, Julian attends one-to-two appointments per month, with certain months carrying heavier loads than others. Jeannine expressed feeling guilt and resentment towards how consuming the appointments can be. However, she also emphasized how grateful she is for our health care system, and she feels so lucky to have such an amazing son. Julian’s healthcare professionals have kept him stable all these years!
Jeannine’s Advice to Other Transplant Families
It’s okay if you feel crazy and hypervigilant during the first year post-transplant. It is normal to feel worried about hurting your child by accidentally missing a dose or exposing them to others. She also said that it is important to give yourself permission to relax and live, and to let your child experience life. Lastly, bringing things back to advocacy, she reiterated that if you believe in something, do not accept no for an answer; continue advocating. Jeannine used to be a support worker before having Julian, so she knew that there were more resources out there than what was being offered to her. When she found herself in grey areas, she continued negotiating and fighting to have her and Julian’s needs be met.
How COTS has Supported Jeannine and Julian
When asked about COTS, Jeannine said that Debbie is amazing. As a single mom, Jeannine has felt supported through everything and COTS helped pay for Julian’s medications that they did not have coverage for. Additionally, COTS helped with gifts during Christmas-time. Julian has attended camp and always talks about how much he loved it. Jeannine also finds that typically, it is hard to find parents that she can relate to, but COTS has created a supportive space that is fun and inclusive where family and friends are always welcome. A highlight for Julian was the Vancouver Canadians baseball game. He had an absolute blast and actually got hit with the ball; however, he was fine and got the ball signed!
Julian in a Nutshell
He is incredibly polite and amazes Jeannine every day by how happy he is. Although he does get tired of some things, like blood work, he is otherwise very upbeat and loving to be around. He loves to dance, rehearse his favourite characters’ voices, and enjoys pretending to be a parkour athlete. Despite having right-sided weakness from the stroke that he endured early on and his diagnosis of cerebral palsy, he is resilient and inspiring. Jeannine loves being able to cuddle Julian now, as prior to receiving the transplant, she could not pick him up or listen to his heartbeat.
One word to describe Julian? BRAVE