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photo Precious Lives, Meaningful Choices
Fred Fountain
University of Calgary

From the University of Calgary Teaching & Learning Centre. Among children with multiple special needs are some whose medical conditions will severely limit their potential lives. Their families struggle to give them the best possible quality of life while knowing that the time they have is limited. In this film four families share their experiences.

Shaian Hasheminia was born with a rare neurodegenerative disease. He cannot hold his head up, and must be catheterized, tube-fed, and frequently suctioned. Cassandra Patterson was born with a rare genetic deletion. She’s now 18 months old, has multiple medical issues, and is deaf. Ronan Houghton had an undiagnosed neurodegenerative condition, yet was able to attend school in a wheelchair with the constant attendance of an aide. He died at five. David Walsh is seven years old and has Infant Refsum’s disease. He has no muscular control, and needs hearing aids and leg braces. He goes to school, but must return home at lunch for tube feeding.

Among the challenges their parents discuss are finding and training care assistants; dealing with caregiver turnover; coping with medical staff unfamiliar with these rare conditions; meeting the needs of the family’s other children; and, most of all, dealing with constant uncertainty about when the end will come.

One parent talks despairingly about how tired she had become of teaching hospital staff about her child’s condition. When she asked that she not have to deal with any more student nurses, she was labeled a “difficult” parent. Other parents point out that staff see the children at their worst, disoriented and stressed by the hospital environment. They don’t see the quality of life the children experience at home, and therefore assume that the parents are just waiting for the child to die, and do not want anything other than palliative care. One parent talks of being repeatedly pressured to sign a do-not-resuscitate order, and told she didn’t understand how serious the situation was. Yet families talk about positive conversations with medical professionals as well, and of the ways that physicians and nurses have helped them to deal with their situations.

These families are embracing their children’s lives with courage, love, and hope in the midst of uncertainty. Their reflections will be enormously supportive for parents in similar situations, and will help healthcare providers gain insight into how such families learn to cope with children who have progressive, life-limiting illnesses.

41 minutes
© 2006
Purchase $229 DVD
Order No. QA-464
ISBN (DVD) 1-57295-888-X

Awards & Conference Screenings
Western Psychological Association
National Health Information, Bronze Award

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Awards & Screenings

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