Baby Rosalind, or Roz as the Doyles affectionately call her, was born on Oct. 27, 2018 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 with her parents and brothers at Canuck Place, the province’s pediatric palliative care provider. It will forever be a special home for the Doyle’s 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,” said Audrey, Roz’s mother.
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, 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 and incredibly thoughtful gifts for the family were handed out.
“The holidays are about spending time with your family,” Audrey said. “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.”
Roz passed away the evening of Nov. 25, 2018.
“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,” Audrey said.
“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 support the Doyle family, with bereavement counselling and 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 can mean everything.”
You can Light a Life this holiday season for Canuck Place children like baby Roz. Donate before Dec. 31 and your gift will be matched by John and Claire Nicola and Friends.