Nimkee Angel Day in SickKids NICU

It is becoming more common to see families posting photos at the end of their child's life and yet each time I see such pictures I am thankful for the parents amazing sharing. My Baby Is An Angel is a blog by a mom of six children honoring one child still born and later named Noah-Alexander (along with her guilt about the silence accompanying this birth) and Bennett-Chadlen "Nimkee" born with Trisomy 13 who died at one week. The website includes links to resources and other family sites and Melissa later wrote a letter wishing parents and staff were more aware that Trisomy 13 is not always a condition 'incompatible with life'. Family photos on Picasa include a poignant transition from mom's pregnancy to grief and death in the NICU and a beautiful set of photos by a photographer with Now I Lay Me Down To Sleep of Nimkee's death in SickKids NICU. Bennet died surrounded by his family's love and tears and father Chandlen playing a song composed for his son. You can hear the song accompanied by the pictures below. Thanks to Melissa and Chandlen for sharing these moving and unforgettable images of Bennet's life.

Under a video of Bennet, his mom writes:

~Breaking the silence of the taboo subject of Infant Loss~

~The background music was written and recorded by Bennett-Chadlen's father, Chadlen. He wrote the guitar portion while he was in the NICU, and this is what our sweet boy heard as he drifted away in our arms.....this montage captures our final moments together. Viewer discretion is advised. I realize that many of you may not understand why a family might want these photos, but they're all we have to hold onto.

~I share this with's your choice whether you view it or not. Upon viewing, you will understand what we went through....please show compassion to any grieving mothers that you know. Even if you don't have words, a tender touch is enough.

~I'm here to break the many like me don't have to feel so alone.

~We will never forget, and we want you to always remember.

Nimkee's Facebook page has 169 members!

Have A Heart Toydrive for CCCU and PICU

On Friday, Pamela and I picked up toys at several spots downtown for a toydrive with several SickKids families.

Child Life worker Kim 0'Leary had sent a list covering toddlers to teens and from rattles and aquariums to Nintendo DVs. The Sasha Bella Fund donated $2,500.00 to Rehab for toys and tools and The Wire filled a trolley to cover the ICU lists and art supplies, cars, mini ponies, clay, games and books.   

At 2p.m Friday the families met and filled a chunk of the Atrium by the front desk. I took this picture with my phone of the Celsie and Veloso and Schultz families.

"a healthy dose of social networking just in time..."

The headline "SickKids receives a healthy dose of social networking just in time for the holidays" made me very happy, not the least because the arrival of Upopolis was a complete surprise. I first saw the news in a short Metro article and Zach made me smile - "“You hear nurses using words, words like febrile, so with this I can look it up" and get homework assignments, setup blogs, email and instant message. Zach again:
“It’s really user-friendly. It’s a bit more than Facebook. You can connect with other patients and friends as well, so you can keep up with them. You’re able to feel as normal as you can.”

Upopolis tags itself as "a healthy space for kids to connect" and the factsheet describes it as software as a service from the private foundation Kids' Health Links Foundation hosted by Telus on a private network at several Canadian hospitals since 2007 - it is specifically for kids to communicate with family, friends, teachers and classmates and access medical information and hospital events and resources. There is no public registration so I expect referrals are initiated with hospital and care centre staff. Techvibes writes about Christina Papaevangelou and her father Basile working to find "ways to help kids in care stay connected" and developing a partnership wtih McMaster Children’s Hospital and TELUS. Kudos to all who made it happen!

Readers of the blog may remember an earlier post about the large international forum AbilityOnline which I joined just over a year ago. So far no news of the planned upgrade and the website has news from 2007. It is sad to see such important communities trapped in hard to update one-off web platforms.

Two years ago when I spoke to SickKids technical services about family-staff web communication it was confirmed the hospital was seeking a social media platform. I am pleased they chose a patient inspired software made in Canada and along with Care Pages, SickKids now supports patient to patient and family to public communication. The tools cry out for hospital wide wireless, a service rolling out in other Canadian paediatric hospitals. Expect computers in family resources areas and on the floors to be saturated. Free wireless supports hospital family diversity since families with means have a Rogers or Bell wireless stick.

CFAN needs your help for survey on parental/caregiver presence during induction and recovery. Please circulate.

From Sue Robins of  The Canadian Family Advisory Network

Dear Friends and Colleagues:

We are writing to ask for your help in circulating a survey link for parents and caregivers about parental/caregiver presence at anesthesia induction and post-anesthesia recovery.

The survey is part of the Child and Family in the Healthcare System project of the Canadian Child and Youth Health Coalition (CCYHC). Some of you know about the project; some of you know about the Coalition, and some of you know about both, but please allow us to provide the essential background for those who don't. (Much of this information is also included in the attached PDF to be forwarded to parents and caregivers as well as on the last page of the online survey).


The Canadian Child and Youth Health Coalition (CCYHC) is a collaboration of ten major national organizational and program members working together with a common vision to advance the cause of child and youth health care in Canada. We represent The Canadian Family Advisory Network (CFAN) on the Coalition's Steering Committee. You can find out more about the Coalition and its members at<>

CCYHC has established the Child and Family in the Healthcare System Working Group to explore the ways in which children, youth, and their families are supported and included within the healthcare system, a task that entails, among other things, identifying differences in practice at various hospitals.

The Survey

The Working Group's first project is the investigation of hospital practices related to parental presence at anesthesia induction and post-anesthesia recovery. Different hospitals have different practices as to if, when, and how parents/caregivers can accompany children into the operating room until the children are asleep and in the recovery room when the children are waking up from anesthesia.

Please note that though the issue is generally called "parental presence ..." we are keen to hear from other caregivers (grandparents, foster parents, aunts, etc.) who may have been present-or who perhaps wish they could have been present-with a child or youth during induction or recovery.

We would appreciate your help in distributing the link to the survey to all parents or caregivers on your advisory council or, for those of you who work with families in a different capacity, to those parents and caregivers you think would, because of their experience with a child or youth who has had one or more surgeries, be interested in contributing.  The survey is submitted automatically electronically online, so there's no need to collect surveys - it is all paperless.

Please cut and paste the text (including the survey website link) at the bottom of this page and forward to your contacts.  (We have already sent another survey to all of the academic health centers that have paediatric surgical programs and to a number of community hospitals across Canada, and we will soon send another survey to members of youth and children's councils.) The survey takes about 20 minutes to complete.

We hope most of the parents and caregivers can complete the survey by December 15, 2009.

Survey Results

The names of all responders and the name of the hospital where their children's surgery or surgeries were performed will be kept confidential. Any reports, publications, or presentations resulting from the surgery results will contain only summary data that will not identify the parents/caregivers or the hospital. We will be happy to share the results with all those who contributed and with all the Coalition members. Working with the survey results, the Working Group, in consultation with CCYHC, will determine best practices and develop recommendations that will be shared with all the hospitals.

On behalf of our Working Group, thank you for your interest and participation. If you have any questions, please contact us by calling Melissa Clulow (CCYHC National Coordinator) at 514-656-1268 or by emailing

Respectfully yours

Frank Gavin and Sue Robins

Co-Chairs, Child and Family in the Healthcare System Working Group


For you to cut and paste to your family contacts:

Subject:    Survey: Parent/Caregiver Presence at Surgical Induction and Recovery

Dear Friends and Families -

We are writing to ask for your help in completing a survey for parents and caregivers about parental/caregiver presence at anesthesia induction and post-anesthesia recovery.  The survey is part of the Child and Family in the Healthcare System project of the Canadian Child and Youth Health Coalition (CCYHC).

Please click on the link below to complete the online survey which asks about your experiences going with your child into surgery and the recovery room.

A full description of the survey is attached. This description also appears on the last page of the online survey.

The survey should take approximately 20 minutes to complete.

Please submit your responses by December 15, 2009.

Thank you very much for your time and attention - your input is important to us!