Your Child
When your child is seriously ill or dying, the kind of care they need will change as their illness changes. You can work with your healthcare team to plan the care that’s best for your child. You can help your child understand what’s happening and find ways to cope with their symptoms and feelings.
Caring for your unborn child
When pregnancy is ended for medical reasons
While pregnant, you may have received devastating news that your baby had a serious medical condition. Sometimes this means that the condition would significantly limit life expectancy or quality of life if your baby survived pregnancy. You may also have been told that you or your pregnant partner has a medical condition that is life-threatening should the pregnancy continue.
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Planning for the delivery of your baby who has a serious illness
You may be visiting this site because your baby has received a difficult prenatal diagnosis, or perhaps your newborn baby has complications or a condition so severe that they are not expected to live very long.
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Understanding and coping with the condition
Children living with serious illness
When your child has a serious illness, every part of their life is affected. The illness, treatments and side-effects can cause changes to your child’s body, mind, activities, routines and relationships.
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Understanding prognosis
Healthcare providers use the term prognosis to describe what they predict may happen to a patient who has an illness or injury.
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Living with uncertainty and fears of the future
As the parent of a child with a serious medical illness, you’ve likely faced many moments of great fear and worry. You may have found ways to push aside your fears to care for your child or to cope personally. Or, your fears might be a part of your daily life. For some parents, living a life where the future is uncertain starts when their child is born or even before. For others, living with worry and fear that their child might die may be a new and overwhelming experience.
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Quality of life
The term quality of life refers to how comfortable or satisfying a person’s life is. Your child may have a improved quality of life if they feel physically comfortable, happy, and can take part in activities they enjoy. Your child may have a reduced quality of life if they have lots of unpleasant life experiences.
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Managing symptoms
Your child may have symptoms that are part of their illness. They may also have symptoms that are caused by the treatment for the illness. Tell your healthcare team about any symptoms that bother your child.
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Communicating with children about their serious illness
Talking with your child
“Where you can, and where you are brave enough, to sit and listen to your kid, they know exactly what it is that they are ready to do, when they are ready to do. They know their body, they know if they are dying, they have a spiritual connection. I had to work really hard not to let my fear get in the way of his autonomy.” – Kim, mother of KevinRead more
When your child has difficulty communicating
When a child has a serious illness, they may lose their ability to speak, or find it is harder to speak than it used to be. This can be a scary and frustrating experience for children and their family members and can cause feelings of helplessness.
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