by Bev Foster B.Mus, B.Ed, A.R.C.T., A.Mus
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It was 1 p.m. on a Thursday afternoon in October 1997 and I remember it like it was yesterday. Rob and I were delighted to be welcoming our fourth child into the world, Josee Michelle. Things were moving along as they had during the three previous labours. But then the words “We need to get the baby out – now!” were uttered by the obstetrician. The urge to panic was obliterated by the urge to push. Once she was out, she was whisked away and taken to the NICU. I was not able to hold her and feel her against my own skin and I knew something was wrong. We discovered later that one of the complicating factors was hydramnios, a condition in which there is too much amniotic fluid around the fetus. I was horrified that I might lose her. Losing your child is every parent’s nightmare. I am grateful that Josee recovered and is a vibrant 11 year old today.
But there are too many stories where children don’t recover and die in spite of our best efforts to provide quality care and life prolonging interventions. Although death rates for children in North America are remarkably low, pediatric palliative care is an emerging field. While children are in and out of hospital for treatment with life-limiting illnesses, they generally die at home surrounded by their family and loved ones. In this special issue of Doorway to Room 217 we want to honour children and their caregivers. We dedicate this special issue to the emerging field of pediatric palliative care. It is packed with articles and stories from leading pediatric caregivers across North America that we hope will provide information and inspiration.
While not all of the articles focus on music, it must be stated that music is a natural intervention for pain and symptom management and quality of life care in the treatment of children who are dying. Music therapist Beth Dun practises at the Royal Children’s Hospital in Australia and believes music is important for the hospitalized child because it is:
- a familiar part of childhood
- associated with positive experiences
- easily accessible - physically, psychologically and socially
- easily controlled by people of all ages
- something which can be shared with family and friends
She believes group music experiences can transform perceptions, help sick children and their parents reduce tension by having fun and laughing and provide moral support and empowerment over their circumstances. (Aldridge, D., (ed.) (1999). Music therapy in palliative care: New Voices. pp 60-63. London: Jessica Kingsley Publishers).Take a moment to explore the Did You Know? link to the new Center for Expressive Therapy at Akron Children’s Hospital.
In this edition of Doorway to Room 217, two American pediatric doctors, Dr. Stefan Friedrichsdorf and Dr. Suzanne Toce, talk about pain and symptom management in pediatric palliative care and in the NICU respectively. A Canadian family doctor, Dr. Merilee Brown, who practises palliative medicine, shares from her heart her sense of being good enough to care for her 7 ½ year old dying neighbour. Music therapist and grief specialist, Kathryn Nicholson from Canuck Place, the first children’s freestanding hospice in North America, shares her insight into navigating the wilderness of grief with sibling bereavement support programs that incorporate expressive arts, education, peer support, and recreational play. Simone Stenekes, a Clinical Nurse Specialist in pediatric symptom management with Winnipeg Regional Health, in collaboration with Dr. Mike Harlos, Co-Chair of the Canadian Network of Palliative Care for Children and Dr. Chris Hohl, provide an overview of national and international developments in the pediatric palliative care field. Tear Soup, a wonderful resource for children, is reviewed by Karen Rennie. There is also much to inspire you from near and far in this issue’s Rooms Around the World and Did You Know links – enjoy the exploration.
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