The Sasha Bella Fund For Family-Centred Care

In honor of SickKids patients, families and staff and our Sasha Bella, the first daughter of Pamela Stein and Jonathan Blumberg, president of The Wire

Sasha was born June 6, 2004. She lived with gusto with her Alagille Syndrome and pulmonary atresia, bravely tolerating many interventions at SickKids. At 18 months, just as she was learning to walk, Sasha suffered a series of serious unexpected complications following a 2nd cardiac surgery. After five months at SickKids, we brought her home for five precious weeks with family and her second birthday. Sasha died peacefully on June 20th, 2006.

Family centred care

Care that listens and engages the child and family is not only respectful but also necessary for diagnosis, care and patient safety. Empowering parent expertise in their child helps children, families and staff. And continuous improvement involves parents throughout the hospital in policy, education, program development, implementation and evaluation, facility design and even hiring.

Pediatric palliative care

Bringing Sasha home to die was a positive outcome for Sasha and her family after 5 months of diminishing quality of life in hospital. As SickKids researchers discovered, only 8-12% of Canadian children needing advanced palliative care receive the resources. We support SickKids work with the national TRAC-PG network through an Innovation Fund into palliative research and an annual research symposium.

Patient safety

“At Sick Kids the safety of patients, staff and visitors is our number one priority.” (SickKids website)

Patient safety requires leadership, programs and continuous evaluation. Effective communication with patients and families, within the staff team and between medical teams is key, as is building a culture that encourages disclosure of medical error. The fund supported a first Inter-professional Practise Education Weekin 2007, created a hospital-wide IPP award and supports the annual Families As Partners In Patient Safety symposium.

Support SickKids Hospital

sasha_05122005View a list of low cost, high impact initiatives the fund worked on with SickKids and the Foundation.

Donate online (type Sasha Bella Fund when asked “Please assign my gift to the following SickKids Foundation Fund”) or call 416 813 6166 to speak to a member of SickKids Foundation.

The top photo was taken by Heather Rivlin for Now I Lay Me Down To Sleep.

Family-centred paediatric care is an ideal, an attainable goal, an approach to organizing care, and a set of specific practices. At its root it recognizes the child-patient as first of all, and at all times, a member of a particular family. It therefore regards the family’s involvement in planning, providing, and evaluating the child’s care as not only desirable but necessary. Real family centred care values and accommodates the family’s love and its expertise. In the end, it allows the child, wherever he or she may be, to be always at home.

Frank Gavin
Canadian Family Advisory Network

After much research and exploration and talking with SickKids Foundation, we found the fund that addresses the goals and priorities that Diane and I have for helping SickKids. It’s called the Sasha Bella Fund and it’s named after a beautiful little girl named Sasha Bella Stein-Blumberg. Her parents set up the Fund after she passed away in June 2006 and it does great work particularly in encouraging family-centred care in the intensive care units and general units, advancing palliative care and support for parents and promoting inter-professional education. It’s a fund and a cause we are proud to support and we encourage everyone to take a closer look.

Janis Purdy and Diane Flacks

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