By Jan Biles
A child dying before his parents goes against the natural order of life. But Alva Skiles says it occurs more often than people might think.
"I don't think it's that rare by accidents or by a terminal condition," said Skiles, a registered nurse who has worked in the pediatrics unit at Lawrence Memorial Hospital since the summer of 1990.
Last year in Kansas, 266 children under the age of 1 died, according to statistics compiled by the Kansas Department of Health and Environment. Sixty-four children between the ages of 1-4 passed away, and 74 children between the ages of 5-14 died.
A child's death is never easy to accept for family members, friends or medical personnel.
"On one hand you're suppose to stay professional, but pediatric nurses get involved with the kids," Skiles said. "For the most part, kids get sick fast and get well fast. When they die, it goes against the natural order of death, and you still feel that you've failed."
Oftentimes, after a child dies, medical staff will have a "debriefing" to talk about the case and sort through their own feelings, she said. Sometimes, medical staff go to the child's funeral to help their own grieving process.
Skiles remembers a couple of years ago when a child died of an undetermined condition.
"The doctor didn't let it go," she said, describing how the physician continued to research the child's symptoms and talk to other colleagues about the case. "He eventually figured it out and reported back to (the staff) what it was. We don't like ambiguity, and we want a name for (what's wrong)."
Skiles said medical personnel must know how to help children and their families deal with death and the grieving process. Referrals to hospice and respite care, making connections to the family's faith community and providing information about support groups are important.
"A lot of times parents don't want to talk to kids about death, but children are very perceptive," she said. "So we help them to be honest with the kids so the child is given permission to say goodbye or to say this is what they want (to do before they die). Parents are not really being protective (when they avoid discussing death). The child may need to express their love to the parents or to say thanks to the family."
Talking to a child about his impending death may relieve some of the pressure the family is feeling, too.
"But," she said, "it all depends on the parents' ability to cope and the child's ability to cope."
- The National Organization for Rare Disorders Inc., P.O. Box 8923, New Fairfield, Conn. 06812-8923; (203) 746-6518; website
- Project Joy and Hope for Texas; (713) 944-6JOY or toll free at (866) JOYHOPE; website
- Department of Symptom Control and Palliative Care, M.D. Anderson Cancer Center, 1515 Holcombe, Box 08, Houston, Texas 77030; (713) 792-6085; website
- End-of-Life Care for Children, Texas Children's Cancer Center, Texas Children's Hospital, Houston, Texas; website
- Children's Hospice International, 2202 Mt. Vernon Ave, Suite 3C, Alexandria, Va. 22301; (800) 2-4-CHILD or (703) 684-0330; website
- Pediatric Pain-Science Helping Children, IWK Grace Health Center, Dalhousie University, Halifax, Nova Scotia, Canada; website
- Children's International Project on Palliative/Hospice Services (ChIPPS), National Hospice and Palliative Care Organization, 1700 Diagonal Road, Suite 300, Alexandria, Va. 22314; website
- The Candlelighters Childhood Cancer Foundation, 3910 Warner Street, Kensington, Md. 20895; (800) 366-2223; website
- The Compassionate Friends Inc., P.O. Box 3696, Oak Brook, Ill. 60522-3696; (877) 969-0010; website
- Growth House, Inc.; (415) 255-9045: Excellent source for publications and links regarding end-of-life care; websiteBooks
- "Shadows in the Sun," by Betty Davies (Brunnder/Mazel, 1999; $29.95)
- "Living with Grief: Children, Adolescents and Loss," edited by Kenneth Doka (Hospice Foundation of America, 2000)
- "The Grieving Child: A Parent's Guide," by Helen Fitzgerald (Simon and Schuster, 1992; $12)
- "Some Folks Say: Stories of Life, Death and Beyond," by Jane Hughes Gignoux (FoulkeTale Publishing, 1998; $29.95)
- "Care of the Dying Child," edited by Anne Goldman (Oxford University Press, 1998; $29.95)
- "Hospice Care for Children," edited by Sarah Zarbock Goltzer and Anne Armstrong-Dailey (Oxford University Press, 1993; $45)
- "Talking about Death: A Dialogue Between Parent and Child," by Earl Grollman (Beacon Press, 1990; $15.50)
- "Helping Children Grieve: When Someone They Love Dies," by Theresa Huntley (Augsburg, 1991; $8.99)
- "Helping Children Cope with the Loss of a Loved One: A Guide for Grownups," by William Kroen (Free Spirit Publishing, 1996; $14.95)
- "Remembering with Love: Messages of Hope for the First Year of Grieving and Beyond," by Elizabeth Levand and Sherokee Ilse (Fairview Press, 1995; $11.95)
- "You Are Special," by Max Lucado (Crossway Books, 1997; $15)
- "Cat Heaven," by Cynthia Rylant (Blue Sky Press, 1997; $15)
- "God's Paintbrush," by Sandy Eisenberg Sasso and Annette Compton (Jewish Lights Publishing, 1992; $16.95)
- "How Do We Tell the Children? A Step-by-Step Guide for Helping Children Two to Teen Cope when Someone Dies," by Dan Schaefer and Christine Lyons (Newmarket Press, 1993; $18.95)
- "The Andrew Poems," by Shelly Wagner (Texas Tech University Press, 1994; $16.50)
- "Old Turtle," by Douglas Wood and Margaret Pike (Centering Corp, 1992; $5.95)
- "Cancer Pain Relief and Palliative Care in Children," by World Health Organization (Geneva, 1998; $16.20)