A life on the brink filled with joy

Born with a terminal condition, little Kaitlyn could die tomorrow or years from now

Jodie Sinnema, The Edmonton Journal

Published: Sunday, November 18

EDMONTON - When Kaitlyn Pas was 10 weeks old, her mom suspected something wasn't quite right.

She cooed, squirmed and giggled like any healthy baby. But she couldn't lift her head off her mom's shoulder, her legs hung limp when they should have been kicking.

Initially, nurses and doctors told Hali Harapchuk not to worry, so the news from the specialist came as a slap to the face.

"Your daughter is not going to live past six to nine months."

Kaitlyn was diagnosed with the most severe form of spinal muscular atrophy, a disease that causes muscle wasting and weakness.

The doctor's next words -- advice to immediately seek help from a palliative care doctor for children -- devastated Harapchuk.

Palliative doctors look after people who die within two weeks, she thought. In the United States, only kids who are expected to die within six months are eligible to receive palliative care.

"You go from one moment thinking your daughter might need leg braces to the next minute thinking she will die," Harapchuk recalls.

Five years later, Kaitlyn is still here. While her bright mind can read kindergarten-age words -- like mom, pup and up -- she lost her smile at one year. With the help of a sling, she can move her right arm to draw pictures, but has no finger dexterity to write letters.

She never learned to roll over, sit up or talk. She makes sounds and uses blinks to communicate yes or no.

Kaitlyn can no longer swallow or cough on her own, since her throat and chest muscles no longer work. She is fed through a tube in her stomach and needs someone to help her cough out and suction away fluid.

But thanks to Dawn Davies, a palliative care doctor for children, Kaitlyn has also been given a life filled with joys, says Harapchuk.

Davies helped the family set up their home with machines and aides to help Kaitlyn along. She helped them choose to keep Kaitlyn alive, and to engage her mind by having a teacher give her school lessons. Her team taught Kaitlyn's mom, dad and big brother to take her for picnics by the river and enrol her in summer daycamps.

Davies also taught Harapchuk what palliative means.

"It just means Kaitlyn has the potential to pass away tomorrow or years from now, and until then, we'll offer her the best quality of life, pain-free and happy," Harapchuk says. "There is not a time limit. It's just to give that child the best life she can have."

The family had a scare in August when Kaitlyn unexpectedly threw up in the breathing apparatus she sometimes needs to open her airways and inflate her lungs.

Kaitlyn went into septic shock and was unconscious for days. After three months at the Stollery Children's Hospital, she returned to her home in Sangudo earlier this month where she can sleep in her own bed and resume her kindergarten lessons.

Harapchuk credits Davies for making this possible.

"She is absolutely wonderful," Harapchuk says. "With her upbeat personality, maybe that's what kept us going."

Yet Harapchuk is both optimistic and realistic. She has spent time planning a funeral and she has talked with a grief counsellor about the silence that will come when Kaitlyn's breathing, coughing, eating and suctioning machines are turned off.

"I know Kaitlyn is going to die, so I thought this is the best doctor to have," Harapchuk says. "Yeah, it's horrible, but it's going to be OK."