Friday, September 01, 2006

Obit for 2-year-old, platform for discussing palliative care for babies

In her Aug. 29, 2006, Lifelines column in the Toronto Star, Catherine Dunphy tells the story of Sasha Bella, 2-year-old daughter of Pamela Stein and Jonathan Blumberg, who spent most of her brief life dying.

Cathy showed Sasha's kiddie qualities. She writes the sick baby was noisy, intense, passionate, and she loved an audience.

While strangers may have seen that her skin was jaundiced and her belly distended, What her parents saw were her long fingers that could turn fragile pages in a telephone book without tearing them, her love of chips, crushed ice and watermelon toothpaste, the way she danced in her crib to Stevie Wonder, the big grin with which she'd greet her dad, how she would slap her forehead as if to say "Oy vey."

The writer explained Sasha's illness in layman's terms:
Born with a complex and very serious form of the rare Alagille Syndrome and a paucity of bile ducts causing bleeding and relentless internal itching, Sasha was missing the connection from her heart to her lungs.

It's clear that Cathy and Sasha's parents used this obit to tell readers that palliative care is for babies too and that To honour her, Stein and Blumberg have set up the Sasha Bella Fund through the Sick Kids Foundation to explore ways to support the parents — and perhaps some staff — of dying babies and children in a hospital geared and better suited to miracles.

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