The Sasha Bella Fund is a tribute to Sasha Bella Stein-Blumberg,
first daughter of Pamela Stein and Jonathan Blumberg, president
of The Wire.
Sasha was born June 6, 2004 with Alagille Syndrome and no pulmonary
artery. She bravely tolerated many interventions at SickKids and
thrived to 18 months until, in December 2005, severe complications
after a second cardiac surgery ended her surgical plan. We brought
Sasha home May 17, 2006 and she died in our bed on June 20th. Sasha's
sister Mia was born 12 hours later.
Family centred care involves patients and parents as integral
to a care plan. A Heart Centre Award for Excellence
in Family-Centred Care recognises exemplary nursing practise.
Other activities include a reading kit, stroller, program
mural and we are investigating added internet and music
resources. In 2005, we built an editable website for Toronto
Critical Care Nurses. We will soon meet with SickKids NICU, a birthplace of family centred care, to brainstorm.
Bringing Sasha home to die was a positive outcome for Sasha
and her family yet only 8-12% of Canadian children
needing advanced palliative care get
these resources. We support SickKids Palliative
Care Service and independently The Wire is working on websites for the Research
in Palliation and Grief network and the Unicorn Dream Dinner fundraiser for the Max and Bea which in 2007 raised $167,000 for advanced programs in dying and grief support.
Interprofessional Practise
Donations
IPP fosters
team collaboration for better outcomes, higher patient safety and improved resource
use. IPP is a primary facilitator of family centred care in
a large hospital with knowledge silos and inter-disciplinary
competition. The Fund sponsored and spoke at SickKids first IPP
Education Week in November, are working with
SickKids IPP and Family-Centred Care teams to launch a
'story project' telling child, family and care giver communication stories, and are talking at seven mandatory CCCU IPP education sessions Jan-March 2008.
