Best wishes to all at Sickkids Hospital



We wish every child and family and staff at Sickkids the very best for the holidays and in 2009. The time can feel a bit surreal. Exhausted families appreciating every moment with their child. Staff working holidays, covering for colleagues taking a break. Single parents, partners, siblings, brave patients all trying to keep it together. Smiles and tears. Wonder about the future. Families in groups, napping on sofas and streaming quietly into rooms. An unusual quiet in the public spaces. It's a time of great generosity, hope and heightened feeling in an already emotionally saturated place. Three years ago on December 14 Sasha went for her second cardiac surgery, her eighth proceedure, and nothing went as we hoped. It was before chanuka so this picture above is our one and only. I will never forget the early morning sun bathing room 74 in light on new years day after two weeks. I shooed some nurses laughing because Sasha was light on the morphine, starting to awake and looking uncomfortable and I desperately wanted her to sleep and wake up stronger. Now three years later, Mia and Eve light chanuka candles and our little family is in a different place and yet Sickkids is never far from our thoughts. We wish you comfort and joy and look forward to helping in whatever small ways we can next year. Here is our little family now with Mia lighting Sasha's menorah and coincidentally wearing her bravery bead necklace.

Sickids Patient Survey Now Online


Sickkids.ca recently added an online Quality and Risk Management survey to their homepage titled "How Are We Doing?". The survey begins with a personal letter from Sickkids President Mary Jo Haddad explaining the importance of your information, that it will be carefully reviewed to improve care, held in confidence and to answer any questions please contact the Patient Representative.

You rate 11 aspects of care such as Admission, Nursing Care, Medical Care, Family Centred Care, Information etc as either Excellent, Very Good, Good, Fair, Poor or No Contact. You provide discharge date, child age, clinics or units visited, offer open comment on What Impressed You, What Disappointed You, How Can We Improve patient safety, Other Suggestions and finally optionally provide name and contact information (phone number is asked but not email address).

My immediate thought was yeah, I hope this remains a permanent website fixture. Probably to keep the number of questions down, elements are lumped together so with Medical Care for example you are asked to consider "Caring and concern shown by doctors, attention to your child’s (or your) condition, how easy it was to see doctors, teamwork among doctors" when individual doctors can vary on any one element. The four commment fields have the potential to generate rich data. I see it is not secured by SSL certificate but since you can send personal information it probably should be.

Good to see Sickkids!

CPS paediatric advance care planning

The September issue of The Journal of The Canadian Paediatric Society includes two important documents for families whose child has serious health challenges - click the HTML/Free button to read more on each.

CPS Statement - "Advance care planning for paediatric patients"

Information for Parents and Caregivers - "Planning care for children and youth with serious medical conditions".

SavvyMom Sickkids Crib Campaign

The new SavvyMom.ca fundraising campaign for Sickkids Hospital focuses on mattresses. Very strategic, very close to baby's skin, very savvy. Sarah and Minnow write "We were shocked to learn that The Hospital for Sick Children needs $2.5 million to replace most of its beds, cribs, mattresses and stretchers. Parts for aging equipment can no longer be found, and the hospital is spending funds to rent specialty mattresses because the older-style mattresses contribute to skin breakdown, a condition suffered by many of the tiny patients. We hope the SavvyMom community can come together to reach our goal of $20,000 to buy 50 crib mattresses for SickKids." You can read more at Savvymom.ca. Please consider a small contribution; you can donate here.

“Designer Babies” and the Governance of Life: The Case of Pre-Implantation Genetic Diagnosis (PGD)

“Designer Babies” and the Governance of Life: The Case of Pre-Implantation Genetic Diagnosis (PGD)

Ann Robertson, DrPH, Professor, Dalla Lana School of Public Health, University of Toronto

26 November 2008, 4:10 – 5:00 pm, Joint Centre for Bioethics, Great Hall, 88 College St.

Abstract: Emerging biotechnologies associated with the “new genetics” raise new possibilities for the enduring quest for biological mutability/human perfectibility. Using a Foucauldian perspective, this presentation considers the social, ethical and political implications of one of these biotechnologies – pre-implantation genetic diagnosis (PGD). These implications are discussed further in terms of the notion of “biological citizenship” in the context of a prevailing neo-liberal political rationality. The presentation concludes with a reflection on what social theory has to offer to a consideration of the ethical question “who may live?”

The University of Toronto Joint Centre for Bioethics Seminar Series is an accredited continuing education activity under CFPC and RCPSC programs. This bioethics seminar will be webcast at http://epresence.ehealthinnovation.org/epresence


Sickkids Interprofessional Practise Award in Paediatric Hospice Palliative Care 2008

The 2008 award was presented to the Outpatient Metabolics Team in the Division of Clinical and Metabolics Genetics. The team comprises Dr. Julian Raiman, Dr. Annette Feigenbaum, Dr. Andreas Schulze, Dr. Joe Clarke, Dawn Cordeiro RN, Lindsay Lockyer RN, Doreen Anderson RN, Patty Martinez SW, Helen Phillips RD, Valerie Austin RD, Kara Hitchman GC, Margaret Mackrell RN. Congratulations to each of you on your outstanding interprofessional support of families.

The team were given a paediatric palliative care textbook for their library and individual copies of Getting to Maybe and Living Dying: A Guide for Adults Supporting Grieving Children and Teenagers (Ceilidh Eaton Russell, Max and Beatrice Wolfe Centre for Children's Grief and Palliative Care). The team, in the important tradition of care for the caregiver will go together for treatment and lunch at the Elmwood Spa near Sickkids Hospital. This award was supported by the Sickkids family funds Melanie's Transition Group, The Paige Berry Memorial Fund, The Mitchell Duckman Fund and The Sasha Bella Fund for Family-Centred Care.

Here is video of the award ceremony at Sickkids Hospital Interprofessional Practise Symposium on November 18, 2008 presented by advanced practise nurse Maria Rugg who has provided palliative and bereavement services to Sickkids families for almost 20 years. (apologies to Maria for the poor visibility in the video)

Innovation Fund in Children’s Palliative Care Research 2008 recipients

On November 17, Laura Beaune SW, Samantha Anthony SW, Gurjit Sangha RN, Dr Karen Spalding and myself reviewed four research grant applications. Special thanks to each for the detailed, engaged and constructive review and to Karen for joining us from Ryerson University Nursing Department. We selected two to support this year and one to followup with for future support. The two research initiatives are:

Better Understanding How Couples Cope with a Child’s Life-Threatening Illness, principal researcher Susan Cadell, PhD, MSW - Associate Professor Director, Manulife Centre for Healthy Living Lyle S. Hallman Faculty of Social Work, Wilfrid Laurier University.

Development and Testing Of An Instrument To Measure Parents’ Perspectives Of The Quality Of Children’s End-Of-Life Care, principal researcher Kimberley A. Widger, The Lawrence S. Bloomberg Faculty of Nursing, University of Toronto.

Here is Laura Beaune announcing the grant recipients at Sickkids Interprofessional Practise Symposium on November 18, 2008, with a break to appreciate the winners of the Interprofessional Practise Award also given by the Palliative and Bereavement Care Service at Sickkid.



To contribute to this Innovation Fund please contact Laura.BeauneATsickkids.ca.