The NWT Disabilities Council released a book earlier this year called Nothing About Us Without Us: Personal Narratives of Disability from the Northwest Territories.
The book includes the testimonies of people who are disabled or care for a disabled person in the territory and the challenges associated with receiving proper care in the north.
One of the people who tells their story in the book is Breanne Walterhouse from Yellowknife. Her youngest daughter, Adelyn Walterhouse, has down syndrome. Yellowknifer had the chance to speak with Breanne Walterhouse recently about her experience.
In the book, Walterhouse tells her story about how she finds out that her daughter, still in the womb at the time, had a heart condition. She was told by a doctor that 60 to 70 per cent of children born with that particular heart condition also have down syndrome.
She and her husband, Tim, were given the choice by their doctor to learn if their daughter did in fact have down-syndrome. They agreed so that they could prepare and learned that she did have it and that she would need surgery to address her heart problem six months after she would be born.
The doctors wanted their daughter to be born in Edmonton in case there were complications.
One of the benefits of having a delivery in the Alberta capital is that a nurse from the Down Syndrome Clinic in the city will come to the hospital to answer questions and give support; Walterhouse stated that there is nothing like that in Yellowknife.
After giving birth, she said she went back to Yellowknife with her new baby. She stated that she was given vague information about how Adelyn would hold up after her surgery. The surgeon told her that children with down syndrome generally take longer to recover after surgery, but the doctor from the clinic in Edmonton said the opposite: children with down syndrome generally recover very well after surgery.
Adelyn is now six years old and she enjoys going to school.
Walterhouse said that keeping their baby wasn’t a difficult decision for her and her husband to make and that she was more concerned about her heart condition.
“I just figured that we would figure out the down syndrome part later,” she said.
She added that one gets comfortable with the way a person with down syndrome is and you don’t have as many questions as you do in the beginning.
Nothing About Us Without Us is available for free on the council’s website.