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In memory of Sasha Bella, aged 2; Babies can also be palliative patients, Fund aims to aid parents and staff
Toronto Star - Toronto, Ont.
Their faces are alight as they bend toward their elegant dark- haired newborn, who is smiling in her sleep. She is perfect; they are blessed.
But Pamela Stein and Jonathan Blumberg are also grieving because baby Mia Ruby was born just 11 1/2 hours after 2-year-old Sasha Bella, their feisty, funny, golden-haired firstborn, died June 20.
"It was as if they decided to pass each other on the way," said Blumberg.
As if Sasha didn't give up her battle for life, but handed it over to someone her parents would also cherish.
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.
"Children go to a pediatric hospital to heal, not for palliative care," said Stein. "The staff were very sensitive; the doctors really sad they couldn't help us. A 2-year-old is not supposed to be a palliative patient."
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. An early operation helped correct her heart but it required medications and nutrients that aggravated the liver. Nor was she considered a candidate for a transplant.
"When it's a serious cardiac (condition) and a serious liver condition, you don't have the miracle of a transplant," said Blumberg.
She was a very sick baby, but she was never sickly. Sasha was noisy, intense, passionate.
"She was a bright, happy little girl. She loved an audience," said Jennifer Russell, her cardiac doctor. "I'd come by with a big medical team and she would ham it up. She'd babble away at us 'Hi, Hi, Hi.' "
"She was hilarious, pointing at everything in the room, saying 'night, night' to everything before she went to sleep," said Tessie Koonthanam, her nurse for several months. "She just had a great personality."
But she attracted stares when out with the family. Her skin and eyes were yellowed from the jaundice, there were surgery scars, her belly was 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."
"We were treating her as a normal kid," said Stein. "It's easy to feel really sad and trapped and never take your child outside and never engage the child in life."
In fact, they describe their daughter as "thriving" last December when she went back to the hospital for a second planned cardiac surgery. Sasha had never been able to crawl because she couldn't be on her belly, but she had just walked her first three or four steps. It was to be her pinnacle of health.
During the operation, the blood loss to her lower organs was so extreme the surgeon said nothing more could be done. She was in hospital for the next five months, Stein staying with her all day and Blumberg taking over in the night. She would not sleep without him. She was never alone, and she would not let either parent leave her sight.
Her bleeding never really stopped, but when it became necessary for Sasha to be transfused daily, her parents made the terrible decision to call in the palliative care team.
"What do we have left?" they asked each other. "What can we give Sasha at this point?" Stein had been a project manager with a bank, a specialist in teamwork, a dynamo who gave Sasha "fire and laughter" according to Blumberg, a gifted writer who works for his family's business, www.thewire.ca, and created Sasha Bella Forever, a blog for and about Sasha.
They estimate perhaps more than a million dollars had been spent on their daughter's care; when Sasha was in critical care, 30 to 50 doctors saw her during the course of one month.
She smiled when they carried her outside for the first time in months and she saw their car. It was Wednesday, May 17, just after Mother's Day, and Stein and Blumberg thought they had just days to be together with her. But Sasha rallied a little; they would end up having several more weeks with her. There was joy being home, just the three of them, with the IV, pumps and bags against her stomach, true, but without the low hum of a hospital ward.
"After five long months at Sick Kids hospital, we are taking Sasha home," wrote Blumberg. "Not as we expected and hoped, to continue our lives happily together, but to let Sasha go to sleep in her home, in our bed, surrounded by our love, at the time of her tired body's choosing, in as much comfort as we can provide."
Many of the nurses at Sick Kids read Sasha's blog daily - "It was lovely; it let us all keep in touch," said Koonthanam, who visited the family at home. She also attended Sasha's funeral, a first in her three-year career.
"Sasha touched me so much. It stays with you as a nurse, being there every day as you try and support someone to have the strength to make the decision a lot of people don't have to make," she said.
She turned to the other nurses for support. "Palliative care is a difficult topic but I think the hospital would benefit from an expansion of those services," she said.
When they think of other children, fighters like their spunky Sasha, Stein and Blumberg think perhaps even the finest institution - including the Hospital for Sick Children - could accommodate a little "institutional change."
"To be an authentic place of healing, a hospital has to acknowledge and understand death," Blumberg said. "The two are not separate."
Author: cdunphy @ thestar.ca