Labatt Family Heart Centre Annual Retreat

On February 7, 2007, SickKids Foundation announced that Arthur and Sonia Labatt had donated "the largest gift in the history of The Hospital for Sick Children and the largest philanthropic investment in children’s cardiac medicine and research in North America" to expand SickKids Cardiac Program into the Labatt Family Heart Centre. Having lived on 4D with Sasha only 9 months before, I remember our exhiliration at the news and our hope that the investment in technology and staff would be accompanied by expanded psycho-social and family-centred support. We worked with the Heart Centre in 2006 to setup a nurse award for family centred care practise and then spent most of 2007 with the palliative team, TRAC-PG palliative network, the first Sasha walk in June and SickKids family - IPP initiatives.

The retreat was titled "Enhancing Integration and Collaboration" and the afternoon was an inspired reintroduction to a world class team in rapid movement, passionate about patient and family outcomes. A new direction expressed is the desire to ultimately continue care past 18years and into adulthood for best support.

After grabbing a quick sandwich lunch, the 115 (out of about 350) Heart Centre professionals received a year in review by Karen Kinnear standing standing in for Dr Steve Schwartz. The 2007 milestones make for a long list, here are many, but not all.

Labatt Family donation announced. Reinitiate George Brown College's Interprofessional Cardiology Certificate Program. Devise a protocal to allocate a 1/2 million dollars of Innovation Funds yearly. New Heart Centre management structure. Dr Andrew Redington and Dr Glen Van Arsdell reappointed to a second 5 year terms. North America's largest school AED advocasy program (portable Automated External Defibrillators that diagnose and treat cardiac arrest). Cardiac Critical Care where Sasha spent 5 weeks became a distinct intensive care operating unit. A new cath lab (Cardiac Diagnostic and Interventional Unit or CDIU) was built and staffed and over the coming months performed cardiac caths, MRI-caths and fetal cardiac MRIs. The 3rd annual symposium on "The Left Heart". 200th heart transplant. 17 SickKids transplant patients compete at World Transplant Games in Thailand. CCCU Interprofessional Practise Committee initiated and morbidity and performance database established. Renovation of room 53 for Cardiac CCCU. Surgical team visits China. 11th Berlin Heart proceedure. A second round of Innovation Awards. A first ECMO initiated outside and airlifted to SickKids with the patient successfully weaned off ECMO.

As Dr Glenn Van Arsdell joked later, he and Dr Redington may as well retire as its an impossible list to beat. The Heart Centres big mission is "To be the best paediatric and congenital heart desease centre in the world".

Seema Mital reviewed the new Biobank database which will include genome information and aim to improve patient outcomes; over time prior patients will be added. Bernadette Stanton-Meijer, the new Quality Team Leader, ran through the Innovation Fund recipients - 10 million of the 25 million dollar donation was set aside and a 1/2 million dollars will be allocated yearly for research initiatives, including smaller sets that help make the case for expanded funding from outside SickKids. Both Dr Redington and Dr Van Ardell encouraged everyone there to think about submitting a small research proposal to build on the 10 proposals considered each of the last two years.

Then the magic began with three and a half hours breakout discussion, short break and reports that summarized suggestions and identified three to prioritise. I joined the session on QM as it was chaired by Dr Russell and I have to admit I kinda lost the plot. Six questions had been suggested. Three tables and about 25 people went through the first, patient and information flow, records and bumped surgeries. Not realizing that the converation was flowing logically along all care paths I asked about parent contribution to the data flow (daily medicine entry, observations, lists etc) and while I had the floor I asked about some hours of music in CCCU. Dr Van Arsdell asked how this could be the topic of a small research test.

We were only into the second question of six at time. As a group, we chose support of the Parental Presence Program to be a family-centred initiative to prioritize along with recommendations on several key changes in the flow of sign-off and planning between CCCU and 4D.

We ended with the requisite filling out of an evaluation. I stayed awhile to chat with Dr Reddington about adding fields and a login for patient and parent's to contribute to the database. He is excited by the Cardiac Key that allows patients to download their surgical history to a small encrypted USB memory stick for when they travel. Then Dr Helen Holtby, Sasha's anaesthetist on several occassions, caught me up on some of the research on parental presence in the surgery room, that it is likely age dependent: less impactful for the youngest babies, very important for mid range ages and again of varied impact for older children. The Parental Presence Program was advocated for strongly in 2001 and appears supported case by case at the request of a patient or parent as opposed to the anaesthetician always making the option explicitly available. We will followup for confirmation.

It was good to see those we had worked with, outside the hospital: Dr Tilman Humpl, Dr Desmond Boehn from CCCU, Dr Russel and Dr Van Arsdell who were at the centre of SickKids surgical plan, Dr Lee Benson who together with Dr Jin Lee diligently worked on Sasha's tiny blood vessels over 5 catheterizations, occupational therapist Lisa, nutritianist Cat, NP Paula, nurse Jacky formerly in 4D step down now CDIU, NP Linda Fazari who helped craft our Heart Centre award and several others we met for the first time. There was a buzz in the air. Dr Redington made the most use of the microphones, walking up a half dozen times to pose a question or suggest a connection.

Thanks to CCCU Nurse Educator Cecilia Hyslop for the invitation to the retreat and Karen Kinnear, Director, Child Health Service, for the personal welcome as I walked into the slightly intimidating setting. And thanks for all the many references to family perspectives on research, education, practise and future possibilities throughout the afternoon.