Children aren't supposed to die - they are meant to outlive their parents. They are so innocent, and the world can be so cruel. Many parents wish they could take their child's place. Many wonder what they did wrong. Some question their belief in God. Most would do anything to keep their child alive. In this chapter, we address the opportunities and challenges you face as a parent of a very sick child.
If there is a chance for cure, you and your child will want to pursue it. But your child should live, not just exist as long as possible. Your child's life should be comfortable, and it should be a life that both your child and your family value. But life at all costs is not usually the only goal. This can make it difficult and complicated to make decisions for and with severely ill children.
In the United States, 85,000 children die each year. Some die of problems that are detected at birth, such as birth defects and prematurity. Others die suddenly from injuries such as car accidents. Still others die from cancer and rare disorders that may not be detected at birth but that have a progressive course of deterioration. Each of these situations has its unique problems.
No words can describe what it is like to know that your child is not going to live to be an adult. Your pain can be lessened by:
At the time of death and just afterwards, do the important things that make lasting memories of your child and of your family. Most of all, parents need support and help. Losing a child is extraordinarily difficult, and most parents appreciate some help in the journey. You can comfort your child during her lifetime, and heal with your family in the future.
Seriously ill infants
Sudden causes of childhood death
Fatal chronic illnesses with intact intellect
Communication with children
Disorders with impaired consciousness
|Copyright © 1999, 2006 by Joanne Lynn. This extract from the Handbook for Mortals by Joanne Lynn, M.D. and Joan Harrold, M.D. is used with permission. To learn more about improving care at the end of life visit the main web site for Americans for Better Care of the Dying.|