Story telling in the NICU

It is the smallest acts of communication that can sensitize us to the power and challenges of family centred care, as Diane Flacks learns from Toronto story teller Dan Yashinsky:
'When asked why he has written Talking You In now, Yashinsky's dark eyes look incredibly sad behind his glasses. He says that, for 16 years, he has been haunted by how much of what he and his wife did was by instinct, without medical sanction or encouragement. "We have to re-educate ourselves as to how not to be passive and helpless in the medical environment. How do you reclaim the human dimension in the scientific and medical world? Science has gone beyond our moral understanding of it. "At the very least, every NICU should give parents nursery rhymes to read to their kids."'
Read Diane's powerful Story Telling in the Neonatal unit where Dan also discloses how this professional story teller could not do for his father what he did for his baby Jacob and a very sad realization made by German ICU nurses.

Dan is American born but has become Toronto's storyteller. He is a member of the Writers Union of Canada, is a recipient of the Jane Jacobs Prize for Ideas That Matter and, as his biography suggests, Talking You In is the most recent addition to his program. The performance piece is a collaboration between Dan and accomplished musician Brian Katz and has toured medical audiences in Newfoundland, Ottawa and Wales, where one listener remembers: "I left with a feeling of hope and a conviction of the power of love and the healing potential of stories.... Your piece demonstrates the importance of communicating with sick and premature babies and letting them know how much they are wanted and loved. "

Dan and Brian presented Talking You In to a group of donors and NICU staff on Sunday August 10m resulting in a dynamic discussion about family involvement with staff. Among the staff was the current clinical director, along with Dr Max Perlman, the clinical director while Jacob was in NICU and his wife Nitza Perlman, PHD who has conducted research on the information needs of parents of neonates. The performance was arranged by Lisa Charendoff of Sickkids Foundation Public Affairs.

Melanie's Transition Group - Helping Bereaved Siblings

In honor of their daughter Melanie, Mitch and Dina Blum have setup a new program at Sickkids to help bereaved siblings.

Dad provided this picture of Melanie (left) with her older sister Hailey on "The day we were told she is palliative. I took her home and we went for a swing."

Here is the logo of the Melanie's Transition Group:

The objective of the Melanie's Transition Group is to develop an evidence-based group intervention that will reduce distress and isolation in bereaved siblings, foster coping with grief and daily life after loss, and improve their quality of life with the ultimate goal to contribute to the improvement of quality of life for bereaved siblings and their families. The Blum family was assisted by Dr Maru Barrera in developing the group.

The specific aims of the Melanie's Transition Group are to help bereaved siblings:

a) express their feelings of grief as well as feelings of guilt, anger, relief and happiness in a supportive and therapeutic environment;
b) understand the impact of the loss on themselves including personal changes in self-perception, roles (e.g., from older or younger to only child), relationships, growth and maturation;
c) learn additional strategies to cope with their daily life;
d) understand the impact of the loss on their parents, other family members, school and community; and
e) examine their relationship with family members (including the deceased child), peers and friends.

Melanie's sister Hailey is helping children with cancer by raising money for the Light the Night Walk for the Leukemia and Lymphoma Society of Canada. At the bottom of Hailey's page is information on how to register and join the walkers on October 2nd at Queens Park North at 5:30pm.

Mother donates liver to AGS child

Three year old Prachi Gore, born with Alagille Syndrome, is recovering well after receiving part of her mom's liver during a complicated surgery in the first week of June. Since surgery at Manipal Hospital, Bangalore, Prachi's itching has stopped and her appetite has increased. While not disclosing Prachi's heart condition, the article quotes transplant surgeon Dr Ramcharan as saying “We hope more such people come forward for saving the lives of their near and dear ones."

SSAHPC - Special Services at Home Provincial Coalition

Special Services At Home helps families caring for a special needs child or adult at home. The grants provided by SSAH provide vital support to families to help the special needs child get the developmental support and care they deserve at home. SSAH is a family centred initiative that is also extremely cost effective as it helps keep those with special needs out of institutional care. If your child needs care at home, you have a phenomenal supporter in the Special Services At Home Provincial Coalition. Their website offers many valuable resources and tip sheets including How To Appeal Your SSAH application and an excellent Tip Sheet for families considering an SSAH application with a FAQ on parent concerns, advocasy successes and specific additional web based resources.