Several Sick Kids' parents and people interested in palliative care contacted us after the article and we talked of our experiences, celebrated our loved ones and shared our loss.Children with Alagille Syndrome share characteristic features and one mom wrote that she saw her sister in the smiling picture of Sasha at age 18 months on the first page of the Life section. Reading the story she realised Sasha and her sister shared far more than a facial likeness and so she contacted us.
And so we learned about a little princess from a northern island who passed away after liver surgery having just entered her teen years. She was given the Ojibway name Na-noosh-kaases (Hummingbird) in a ceremony at the Hospital for Sick Kids Critical Care Unit. Her body was bathed in water steeped in cedarwood and then she taken out to the street. And she was named Na-noosh-kaases because, as her sister put it, "Hummingbirds are tiny but fierce fighters."
The connections between the two girls are truly uncanny and Hummingbird gave us a glimpe into what Sasha's life might have been like later. She loved to walk, as if the movement calmed her and would call out in her squeeky voice from her bed to the nurses station asking for the phone, she demanded attention. I remember little Sash racing along the walls of our house, hand over hand, calling out to us whenever she was awake, loving to play with her cellphone.
A hummingbird was painted in CCU in her memory, welcoming those walking along the first corridor through the doors to the isolation rooms and the nurses station.
Sadly, I seldom see humingbirds in the big city. Sasha and her never met and we never knew of her long struggle to live and the many heights she climbed. Both her sister and I dearly wish they had met and that we could share knowledge gained over many years of care. The Privacy Policy we sign at Sick Kids allows patient information to be shared for only three reasons: within the hospital to allow for the care of our kids; for the hospital to post us a follow-up study; and for the Foundation to request financial assistance.
An excellent fourth reason would be for parents to meet other parents whose kids are going through similar experiences. All that would be needed is a tick box on the privacy form indicating that parents are interested in talking to other parents whose kids have the same conditions or treatment plans. There would be no need for bureauocracy, social workers could look in similar files for a tick when a parent requests to talk to another parent and have another tool to support parents.
It was good to hear of you, sweet Naanooshkaases.
