At Canuck Place, we believe that every light brings joy, no matter how long it shines. This holiday season, we shine a light on the journey for Canuck Place children like baby Rosalind, and the joy she brought her family with the precious time they had together.
Baby Rosalind, or Roz as the Doyles affectionately call her, was born on October 27, 2018. She was born with Trisomy 18, a genetic condition also called Edwards Syndrome. Babies with Trisomy 18 have an extra chromosome in some or all of the body’s cells, many do not survive birth, and those that do can live a few months up to a few years. Trisomy 18 affects each person differently, and for Roz, the most serious issues were in her brain and heart.
Roz lived 29 days. She spent almost her entire life at Canuck Place with her parents and brothers. It will forever be a special home for the Doyles because for them, Canuck Place is Roz’s house. The hospice brought light to their darkest days, where they made loving and happy memories despite the circumstances. “This is the place you don’t want to be because it means something tragic is happening, yet at the same time it’s the best place to be because they care so much,” says Audrey.
The Doyle’s first visit to Canuck Place was impactful. Their blended family was well taken care of. Baby Roz, Audrey and Mike’s first child together, and his two boys, Seth (10), and Chase(7), were welcomed by specialized nurses and doctors, who took the time to get to know them and made them feel right at home. “It never felt like the nurses were there because they had a job to do,” says Audrey. “They were always encouraging us to get some rest, so they could hold Roz all night long.”
This wasn’t the Doyle’s first interaction with Canuck Place. At 20 weeks, a routine ultrasound showed irregularities that concerned their doctor. Audrey was referred to BC Women’s Hospital & Health Centre, where their baby was diagnosed with full Trisomy 18, which means every cell in her body carried an extra chromosome. It was at this point, that Audrey and Mike were introduced to Canuck Place. Canuck Place is the province’s pediatric palliative care consult team to BC Children’s Hospital and BC Women’s Hospital & Health Centre.
Canuck Place Nurse Practitioner, Camara Van Breemen, met the family at the hospital. Overwhelmed with the reality of what they were facing, Camara sat with them, and in her calm and thoughtful way, helped them create a care plan that focused on quality of life for the entire family. They felt heard and supported in every decision they needed to make. Camara and Canuck Place gave them hope.
“Roz’s tiny light made a big impact in the short time she was with us. The imprint she made on our hearts is the same as Seth and Chase, only she made hers all at once,” says Mike.
As part of the evolving care plan that Canuck Place supported, it was important to the Doyle’s that Roz get to experience some of their holiday traditions. With the uncertainty of how long she would live, Canuck Place staff worked together to create special memories for the family. Canuck Place nurse Melanie Hameluck got the family out trick-or-treating at a few houses in the neighbourhood for Halloween, and nurse Talia Showers, worked with the recreational therapy and kitchen teams to ensure that Christmas came early that year! In mid-November the hospice was festively decorated, a Canuck Place volunteer dressed up as Santa, incredibly thoughtful gifts for the family were handed out, and the boys were so excited to experience it all.
“The holidays are about spending time with your family,” says Audrey. “Canuck Place gave us the gift of quality time together, and the peace of mind in knowing that help was only a few steps away at all times.”
Caring for the whole family in the comfort of a hospice is truly what makes Canuck Place unique. “We know as Seth and Chase grow up, that Canuck Place will always be a special place for them,” says Audrey. “It felt like their house too, there was always a volunteer to play with them, make crafts or burn off some steam in the Volcano Room”. Tucked away in the basement of Glen Brae, Canuck Place Vancouver hospice, is a sound-proof padded room with mats on the floor and walls to look like a volcano erupting. It’s here that children and families have a private place to work out their big emotions.
Roz passed away the evening of November 25th. “Talia was our nurse that day. She stayed with us the entire day and coached us through what it was going to be like when Roz passed. Nothing can really prepare you, but just knowing what to expect helped us through those moments,” says Audrey. “I held Roz for a long time after she passed. I couldn’t bear the thought of her being alone, and when it was time to let her go, Nikki a Canuck Place nurse, offered to hold her for the rest of the night.”
This Christmas will mark just over one year since Roz has passed. Canuck Place continues to care the Doyle family with bereavement counselling, and family support groups. Counselling support also extends to the grandparents, who attend sessions at Dave Lede House, Canuck Place’s second provincial hospice location in Abbotsford.
“Canuck Place support and care gave us the ability to enjoy every moment we had with Roz,” says Audrey. “They gave Roz the opportunity to experience so much more than we could have done on our own. No matter how much or how little time you have with someone, it means everything.”
The next chapter for the Doyle’s is one of hope. They are expecting a healthy baby girl at the end of January. The boys are excited to welcome another sister to the family, and to them, Roz will always be known as the littlest big sister.