Unfortunately, many families have to cope with the emotional challenges of caring for a child who is severely ill or dying. Children who are severely ill or dying can be helped by palliative care, hospice care, or both. Hospice care and palliative care are both specialized forms of care that support people with serious, life-altering illness. Palliative care and hospice care personnel can help with may aspects of illness, such as pain management, and can provide emotional support.
(See also Illness and Death in Infants.)
Death of a Child
Most often the death of a child happens in a hospital or emergency department. Death can occur after a long illness, such as cancer, or suddenly and unexpectedly, such as after an injury, a severe infection, or sudden unexpected infant death (SUID).
The death of a child can be difficult for families to understand and accept. For parents, the death of a child means that they must give up their dreams and hopes for adding a child to their family and the future they anticipated with that child. While grieving, parents may be unable to attend to the needs of other family members, including other children. Counseling by a specialist who is skilled in working with families who have experienced the death of a child may be helpful.
Sometimes parents respond to the death of a child by quickly planning another pregnancy, perhaps in an attempt to create a "replacement" child. Parents may place their feelings about and expectations of the dead child on the replacement child. Anxiety and fear of another loss may make it difficult for them to form an attachment to the new child. A child who is born after another child has died is at risk of replacement child syndrome or vulnerable child syndrome.
In replacement child syndrome, parents look to a child born after the loss of an older child to lessen their sorrow and fill the void left by the child they lost. They may become disappointed when their grief does not lessen and this may negatively affect their ability to bond to and nurture their new child.
In vulnerable child syndrome, parents may be overprotective and think a child born after the loss of an older child is at risk of developing behavioral, developmental, or medical issues and needs special care and protection from perceived harm.
Parents who are grieving the loss of a child may struggle with an inability to emotionally attach to a new child. These feelings are normal. Counseling for the parents and siblings is helpful.
Helping Children Deal with Death and Dying
Visiting sick children or adults
Parents can ask their child's doctor or other health care professionals whether they should allow their child to visit a severely ill child or adult. Some children may ask to visit family members or friends who are dying. Parents should prepare children for such a visit so they will know what to expect. Parents can help prepare their children by telling them that the person may look different but is the same person. The person may appear ill, may have lost or gained weight, may have lost their hair, or may not be able to communicate as they did previously because of the illness.
Death of a family member or loved one
How much children can understand about death depends largely on their developmental level. Children need to have the death of a loved one or friend explained to them at a level that makes sense to them. For example, preschool-age children may have limited understanding of death. Parents may try to explain death by relating it to a previous event, such as the death of a beloved family pet. Older children may be able to understand death more easily.
Although it might seem to make sense to do so at the time, death should not be equated with "going to sleep and never waking up," because the child may become fearful of sleeping.
Attending a funeral
Parents often wonder whether to bring children to a funeral. This decision should be made individually, and children should be involved in making the decision if possible. When children attend a funeral, a close friend or relative should accompany them to provide support throughout, and children should be allowed to leave if they want to.
Parents should understand that children may be curious and ask lots of questions about death. Parents should let children know that it is alright for them to ask questions.
If tragedy affects someone else, children may feel more confident, and less helpless, if they can contribute. For example, children can:
Pick flowers
Write or draw a card
Wrap a present
Collect food, money, clothing, or toys
If a child appears withdrawn or sad after experiencing a death, refuses to engage in usual activities, or becomes aggressive, the parent should seek professional help for the child.
More Information
The following English-language resources may be useful. Please note that The Manual is not responsible for the content of these resources.
These resources provide information about support for parents, caregivers, and siblings after a child dies:
