Bram Solomon Stein-Blumberg is born

Our first son was born at 8am on January 21, 2011 weighing 8 lbs at Mount Sinai Hospital in Toronto, where Sasha, Mia and Eve were also born. Pamela made it look easy and the team worked like clockwork, pushing us along with minimum discussion: we hung out in the family room from 6pm to midnight wondering when she would be induced. A waiting granny who went to camp with our doctor was Mia's supply teacher last week. Small world. She was waiting for a daughter who is a good friend of a close neighbour. Smaller world. Induction at 2am, scary epidural went well at 3am, painless onset of contractions and three big pushes approaching 8am.

This is our last child and first boy and we wonder what we have gotten ourselves into after finding a groove with Mia and Eve. He had his fingers in his mouth in a few minutes and the birth was so quick he wasn't hungry. He seemed very content and happy to latch. The past is everywhere as I walk around, a momentarily open NICU door filled with isolettes, posters for a palliative support study supervised by SickKids NICU nurse Lori Ives-Baine, and a dusty blackboard listing family centred research projects for 2007. The breadth of birth support is truly staggering.

Earlier, we went for dinner on Elm at the Queen and Beaver and the lamb kidney's were a bit rich in retrospect. We walked under the CCCCU windows on the way home but decided not to walk through SickKids as we did while Pam was in labour with Sasha. After we were transferred to a room on the 10th floor, Bran fed and we unwound as a parade of nurses and doctors visited the next bed. As we brought Mia and Eve to visit and our bed turned into a temporary carnival of love, 2 feet away a mom and her twins were all struggling. But we were home within 36 hours and while the difficult bits (eating, sleeping, parenting 2 older sisters) seemed to slip into place over the next 3 days it took almost a week to choose a name. Bram is named in loving memory of Pamela's cousin Brandon Grajycer. 

Website survey on Patient Representative includes Declaration of Values

The latest SickKids website pop-up survey focuses on visitor knowledge of and experience with The Patient Representative who helps patients and families navigate the hospital and privately deal with grievances. Slide 6 however starts with questions about customer service experiences as Ontario hospitals who do not have one are required to complete a user Declaration of Values (DOV) by June 8 2011. As described in 1.2 of the "Guidance Document for Declaration of Values ECFAA requirement":

"The Excellent Care for All Act (ECFAA) requires all hospitals to have a publicly available patient declaration of values produced after consultation with the public."

The role of the representative is very important in navigating families to resources and addressing grievances. Some parents fear that family and staff disagreement may impact their child's care. Here is how the website describes the Patient Representative ambit of work:

Respect and Support

At SickKids, we understand that a family feels a lot of stress when their child is injured or ill. We will do our best to help you through the process in a way which is respectful of you and of the hospital staff. Families sometimes worry that they will make things worse for their child or for themselves, if they express that they are concerned or dissatisfied with any aspect of care or service, which they are receiving. We understand these fears. Supporting and helping you is what we are here to do. The hospital offers this service because responding to families’ concerns is an important part of family-centred care.

The Patient Rep

* Provides a private place where patients and their families can confidentially discuss their experiences at SickKids.
* Can work with you to address concerns.
* Can help you find the information or assistance you need.
* Can help families and staff communicate more effectively with each other.
* Observes trends and makes recommendations for positive change.
* Passes on your compliments and feedback to hospital staff.
* We will tell you when we cannot do what you are asking.

Here for You

The Patient Representative Service is here to act in the best interests of the patient.

We are here to respond to your family’s needs or concerns.

While the words "patient advocate" or "advocasy" do not appear, the patient rep is the closest SickKids has to a family advocate. In our case, Sasha's mom was upset when a medical fellow joked during the consent discussion for a proceedure and she asked if the doctor could be moved off Sasha's team. This occurred with no fuss and continued for most of the remainder of the stay except when we moved up to his floor and this fellow did a quick consultation on Sasha's arrival and again appeared at a final family meeting to plan Sasha's return home.

Here are the six survey slides which elicit feedback on the Patient Representative and the Declaration of Values.

Family Education Day: Caring for Your Child; Empowering Yourself

SickKids 2011 Family Education Day will be held February 19th (the family day weekend) at the hospital.

Please pass these event details on if you know someone who might be interested.

This education day will be an opportunity for parents/caregivers of children and teens who are patients at SickKids to:

• Network with other parents/caregivers in a relaxed and welcoming atmosphere
• Feel empowered in their role as members of the healthcare team
• Participate in a variety of topics that are relevant and of interest to their families (e.g. sibling support, patient safety, transitioning)
• Collaborate with other parents/caregivers and healthcare providers at SickKids

The event is free and is designed to support families of kids with any sort of health issue and all inpatient and outpatient families are welcome.

The event is designed for parents and there is very limited child care available. Topic wise there is something on offer for all parents or care-givers and several sessions will include staff and parents co-presenting.

The event is coordinated by the Family Centered Care Advisory Council (FCCAC) with input from the Children's Council. FCCAC members will be on hand as well as staff to talk about parent volunteering and other family support services.

You can register online here.

8:45 - 9:15	Registrations, Breakfast and Networking
9:15 - 10:00	Welcome FCCAC, Conference Committee and Mary Jo Haddad
9:30 - 10:00	Turning Lemons into Lemonade: A parent's journey of living with a sick child Jodi Yeilding
10:00 - 11:00	Concurrent Session 1 Support for Siblings Dr. Maru Barrera
10:00 - 11:00	Concurrent Session 2 Families as Partners in Patient Safety Jonathan Blumberg and Rita Damignani
10:00 - 11:00	Concurrent Session 3 Family Legal Health Program and Tangible Supports Lee Ann Chapman, Lawyer, Family Legal Health Program
11:00 - 12:00	Concurrent Session 1 Helping Your Child Cope with Illness and Hospitalization Childlife Service
11:00 - 12:00	Concurrent Session 2 Helping Parents Deal with the School System Speaker TBA
11:00 - 12:00	Concurrent Session 3 Transition from Paediatric to Adult Care Lindsay Yeo, Kariym Joachim and Good to Go staff member Genevieve Kilman BA, CCLS
12:00 - 1:00	Lunch and Networking
1:00 - 1:20	Child and Family Relations: Moving Forward with Service Excellence Marie Pinard and Cindy Bruce-Barrett
1:20 - 2:00PM	Caring for Yourself as a Caregiver Irene Elliott and Janice Mulligan

Family supported palliative research : “Sibling’s Perspectives: Toward a Better Understanding of their Involvement with a Dying Child”

I was very happy to receive this notice from Laura Beaune, SickKids Palliative and Bereavement Care Service Research Coordinator, sent out to the TRAC-PG list.

The Innovation Fund in Children’s Palliative Care Research, sponsored by TRAC-PG is very pleased to announce the recipient of this year’s Innovation Grant:

“Sibling’s Perspectives: Toward a Better Understanding of their Involvement with a Dying Child”

Grant Amount: $9,860.00

Principal Investigator: Ceilidh Eaton Russell, CCLS, MSc(candidate) Max & Beatrice Wolfe Children’s Centre, Temmy Latner Centre for Palliative Care, Mount Sinai Hospital

Research Team: Maru Barrera, Ph.D C. Psych., H/O Program, Dept. of Psychology & Research Institute, The Hospital for Sick Children, Laura Beaune, MSW, Palliative and Bereavement Care Service, The Hospital for Sick Children, Susan Cadell, MSW, PhD, Lyle S. Hallman Faculty of Social Work Wilfrid Laurier University Adam Rapoport, Division of Pediatric Medicine, The Hospital for Sick Children, Max and Beatrice Wolfe Children's Centre, Temmy Latner Centre for Palliative Care, Mount Sinai Hospital, Maria Rugg, RN, MN, CHPC(C), Palliative and Bereavement Care Service, The Hospital for Sick Children, Rose Steele, RN, PhD, Professor, School of Nursing, Faculty of Health, York University, Kimberley Widger, RN PhD(c) CHPCN(C), Lawrence S. Bloomberg Faculty of Nursing, University of Toronto.

This year, 4 excellent applications were submitted from across the country (Toronto, Montreal and Manitoba) and the Review Committee were extremely impressed with the innovations in pediatric palliative care practice and research that each submission offered.

Special thanks to the Grant Review Committee and to our donors, The Sasha Bella Fund for Family Centred Care and SickKids Foundation for their continued support with this exciting initiative.

Please check out the (TRAC-PG website to have a look at previous year’s winners and projects.

All the best,

Laura

Your generous family donations at work as one donation of $5000 by the Sasha Bella Fund allowed for a matching grant by SickKids Foundation. The study lead and contributors are putting Canada on the international map of palliative and bereavement research and helping staff help families in large and small and powerful ways. A big thanks to the committee who read over all the applications and carefully decided where to direct the funds to make a difference: Laura Beaune (Chair, non-voting), Samantha Anthony (SickKids returning member), Christine Newman (TRAC-PG Rep), Winnie Seto (Parent Rep), Valerie McDonald (Parent Rep), Barbara Muskat (SickKids member), Beverly Guttman (SickKids member).

Please help the Sasha Bella Fund for Family Centered Care

It was five years ago this coming week that we brought Sasha to SickKids for her second heart surgery and her world turned upside down. And each holiday season we remember and think of all those at SickKids and also count our blessings.

We are expecting a boy in January so this year rather than holding a fun day we will simply appeal for your support online. Thanks to the generosity of so many over four years, almost S100,000 dollars has been carefully directed to 25 and counting initiatives supporting patient and family centered care, patient safety and palliative care.

These are traditionally less funded areas and we think they are vital to humanizing care, making it safer and broadly improving the experiences of children, families and staff. If you similarly value these programs please
help the Sasha Bella Fund help SickKids families.

The link lets you donate or sign up to get friends and family to sponsor you. Or here is some information you can pass on via email to those you think might help.

Please help The Sasha Bella Fund support patient and family-centred care projects at The Hospital for Sick Children (SickKids).

Sasha Bella Stein-Blumberg was born June 6, 2004 with Alagille Syndrome and
a compromised liver and heart. She was a sweet, loving and determined little girl who lived with gusto. After Sasha's death on June 20, 2006, her parents established a fund to honor her spirit and reciprocate the compassion and skill of staff who cared for her and the family under difficult circumstances.

The fund priorities are supporting SickKids achieve best practice patient
and family-centred care, patient safety and palliative care.

In four years, the Sasha Bella Fund has:

- directed almost $100,000 to 25 low cost, high impact initiatives as of
November 2010. View a list of initiatives at
http://sashabellafund.com/sasha-bella-fund.html
- worked with staff at The Labatt Family Heart Centre, Palliative and
Bereavement Care Service, Nursing, Patient Safety, The IPP Team, GI and
Liver, NICU, Child Life, Sickkids Family Council
- participated at hospital conferences, symposiums, workshops, education
sessions, focus groups and family advisory meetings

SickKids is among the top 5 paediatric research hospitals in the world. Be a part of it by supporting The Sasha Bella Fund For Family-Centred Care at
SickKids Foundation!

Safety team recommends end to car seat loan program

Currently The Going Home page explains to parents:

Taking your child home safely

We want to make sure that you get home safely. All children must be fastened into an approved car or booster seat or wear a seatbelt while they are travelling in a car.

Please bring your child’s car seat with you when you come to take your child home.

Parent Tip! Ask your nurse about borrowing a car seat. (emphasis in original)

If a new safety report's recommendations are adopted, this parent tip will disappear along with the car seat loan program. A review lead by NICU found that cleaning, maintaining and educating staff on multiple models was an onerous and inconsistently practised and presented a safety concern. The report recommends existing seats be removed and that families be responsible for installing a car seat by discharge date and securing their child. Staff will confirm a car seat has been arranged as part of the discharge process and the hospital is working on streamlining advance discharge planning to avoid little notice discharges. The policy does not apply to children needing breathing support and transported home by hospital arranged professionals.

Webcams for baby and family bonding and support

I am not aware of webcams used at SickKids to support families, if you know of any please share. Here are posters on webcams in two NICUs. "Implimenting an NICU Webcam" is a DIY guide from Dr Kenneth Herrmann at The Women's Hospital in Indiana.

This second poster was presented at CAPHC 2010 by Dr Bruno Piedboeuf. 

"I Skyped a baby from the NICU to his own baby shower at home today, brought tears to the mom's eyes, it was beautiful."