The Children’s Organ Transplant Society is ecstatic to welcome Laurel as our 2020 ambassador! Her story as the first surviving pediatric double-lung transplant recipient in BC is our pleasure to tell. Here is her story:
Laurel was born with a high Apgar score– a test given to newborn babies based on appearance, pulse, grimace response, activity, and respiration, where a high score indicates a healthy child.
Up until her eighth birthday, Laurel’s mother, Michelle, recounts her as a typical happy and energetic child. However, her health soon took a turn. That summer, Michelle noticed that her daughter could not keep up in a grocery store and was becoming extremely cold while swimming. While the family invested in a wet suit to regulate her temperature, Laurel’s condition did not change. As Michelle explains, “One evening at the pool she was changing out of her wet suit and had her back toward me. I stopped and stared…..her body was so thin.”
Laurel’s weight loss prompted a visit to their general practitioner, who referred them to a pediatrician. As Laurel and her family live in Quesnel, BC, the pediatrician was only expected once a month. Fast forward a month later, the pediatrician explained Laurel had an enlarged liver and high heart rate. Soon, Laurel was given blood work, a chest X-ray, and EEG, with orders to see a cardiologist the following Monday at BC Children’s Hospital.
Laurel’s family left in early December, only to return 14 months later. After multiple invasive tests, doctors preliminarily diagnosed her with a form of Pulmonary Hypertension. Various medical treatments were tested, with no significant change. As Michelle explains, this is when they first heard the phrase ‘Lung transplant.’
In the new year, Laurel and her mother were airlifted to Sick Kids Hospital in Toronto, Ontario. Specialized doctors confirmed her diagnosis, labelling her experience as Idiopathic Pulmonary Hypertension, and listed her for a double lung transplant.
Unlike many transplant children, Laurel had a relatively short wait time of four months. Prior to ‘the call’ Laurel experienced life-threatening challenges, including several strokes after being on the Nova Lung due to increasing blood clots.
“She basically maxed out the time she could be on that device – it acted as her lungs while she waited for new ones,” explains Michelle. “They didn’t know how many days Laurel had left on the Nova Lung and they were out of options.”
In addition, Laurel was placed on ECMO and Hemo dialysis while waiting for her transplant.
Then, Mother’s Day 2015 came with a surprise: the arrival of lungs. Michelle recalls asking if the doctors were joking, not being sure if the miracle was real.
“As she was transported down the hallway in her hospital bed, I couldn’t hold back the tears. My husband and I gave her a hug and a kiss and then she was taken to surgery,” recounts Michelle.
While the transplant itself was successful, Laurel experienced a longer than normal recovery time. One to two percent of solid transplant recipients (heart, lung, liver, or kidney), contract Post Transplant Lymphoma (PTLD)– an aggressive form of post-transplant cancer. Unfortunately, Laurel’s double lung transplant put her at a higher risk for contraction due to the paired organ exchange and the disease eventually developed in her body.
Eight months later, Laurel left Holland Bloorview rehabilitation and returned home. Her survival of both transplantation and PTLD marks her as the first British Columbian child to survive a double lung organ donation.
Laurel and her family parallel the experience of many liver and lung transplant recipients– extended stays in Eastern Canada with mounting financial costs, increased trauma, and a lack of local support.
These days, Laurel visits Sick Kids Toronto once a year for an annual checkup. Up until 2019, Laurel had pleasant findings with no significant change. However, in late 2019 Laurel displayed signs of rejection and frequented BC Children’s Hospital until her condition stabilized. Each visit to our pediatric hospital in Vancouver marked another long-haul trip from Laurel’s family, friends, and community.
Living in a Northern community with Laurel and her chronic illness has been lonely and was a hard adjustment. Laurel was the first child in B.C. to have a pediatric double lung transplant. There are no support groups in our area for parents that have a child with an organ transplant. We have our family and friends, but there’s something different about connecting with people who have gone through a difficult medical journey with their child.
This is where the Children’s Organ Transplant Society comes in.
A social worker at B.C. Children’s Hospital told us about COTS and I remember thinking “There’s a support group for children and families in B.C. who have had an organ transplant? Wow!” Even though I wish we lived closer to the COTS community, I am still thankful that I can read about other families on social media and know there are families out there like us…that we are normal too.
While Laurel lives a far journey from COTS local Metro Vancouver community, she annually attends Transplant and Kidney Camp at Camp Latona. Here, she can connect and be supported by others that understand her same journey.
Sharing Laurel’s story opens the conversation for those who do not reside in urban centres. The Children’s Organ Transplant Society strives to support all transplant children and families in BC, including those of suburban communities.
“This journey has not been easy, but Debbie and COTS came into our lives when we needed it most and has helped ease the transition into living in a small Northern community with a child who had an organ transplant,” Michelle finishes. “Laurel is our inspiration, she went through what seemed like a nightmare and came out full of joy, laughter and positivity.”