Most often, the death of a child happens in the hospital or emergency department (1, 2). Death can occur after a prolonged illness, such as cancer, or suddenly and unexpectedly, such as after an injury, sudden infant death, or severe infection.
Families often find it difficult to cope with the emotional and practical realities of caring for a severely ill or dying child. Pediatric palliative care, hospice care, or both may be of particular benefit to children who are severely ill or dying and to their families (3, 4). Palliative care and hospice care personnel can address practical needs (eg, pain management, respite care for families) and provide emotional support to the child and family (5).
The death of a child can be difficult for families to comprehend and accept. For parents, the death of a child means that they must give up their dreams and hopes for their child and for the future they expected for their family. The grieving process may also mean that they are unable to attend to the needs of other family members, including other children. Health care professionals can help in the process by being available to the family for consultation and to provide comfort whenever possible (6, 7). Referral to mental health specialists skilled in working with families who have experienced the death of a child may be appropriate.
After the Death of a Child
Some parents respond to the death of a child by quickly planning another pregnancy. Health care professionals who have a supportive relationship with the grieving parents may consider dissuading such a quick pregnancy. Anxiety and fear of another loss may make it difficult for parents to form an attachment to the new child (8). 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 (also referred to with the terms "replacement dynamics" or "subsequent child"), parents look to the new child to lessen their sorrow and fill the void left by the child they lost and may become disappointed if they are still not able to process the grief of their loss. These unresolved feelings adversely affect their ability to bond with and nurture their new child. Pronounced replacement dynamics in the family can adversely affect the subsequent child's self-esteem, self-worth, and individuality. Pediatricians and others caring for the child should monitor for these emotional effects and encourage parents to seek counseling where appropriate (9).
In vulnerable child syndrome, because of their previous loss, parents perceive the new child to be at risk of behavioral, developmental, or medical issues and to need special care and protection from potential harm (10).
Parents who are grieving the loss of a dead child and who are also struggling with an inability to attach to a new child need to know their feelings are normal. If their feelings are not acknowledged as normal, the parents and child are at risk of mental health disorders. The next pregnancy, when and if it occurs, should be forward-looking and not backward-looking.
Death of a Child's Family Member or Friend
Many children experience the death of a loved one. The way children perceive the event (and hence the best response by parents and health care professionals) is affected by their developmental level. Preschool children may have limited understanding of death. Relating the event to previous experience with a beloved pet may be helpful. Older children may be able to understand the event more easily. Death should not be equated with going to sleep and never waking up because children may become fearful of sleeping.
Pearls & Pitfalls
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Parents should discuss with health care professionals whether to have children visit severely ill children or adults. Some children may express a specific desire to visit family members or friends who are dying. Children should be adequately prepared for such a visit so they will know what to expect. In the same way, adults often wonder whether to bring children to a funeral. This decision should be made individually, in consultation with the children whenever 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 necessary.
References
1. Nilsson S, Öhlén J, Nyblom S, Ozanne A, Stenmarker M, Larsdotter C. Place of death among children from 0 to 17 years of age: A population-based study from Sweden. Acta Paediatr. 2024;113(9):2155-2163. doi:10.1111/apa.17308
2. Gibson-Smith D, Jarvis SW, Fraser LK. Place of death of children and young adults with a life-limiting condition in England: a retrospective cohort study. Arch Dis Child. 2021;106(8):780-785. Published 2021 Jul 19. doi:10.1136/archdischild-2020-319700
3. Tatterton MJ, Fisher MJ, Storton H, Walker C. The role of children's hospices in perinatal palliative care and advance care planning: The results of a national British survey. J Nurs Scholarsh. 2023;55(4):864-873. doi:10.1111/jnu.12866
4. Bogetz JF, Anderson A, Holland M, Macauley R. Pediatric Hospice and Palliative Care Services and Needs Across the Northwest United States. J Pain Symptom Manage. 2022;64(1):e7-e14. doi:10.1016/j.jpainsymman.2022.02.015
5. Linebarger JS, Johnson V, Boss RD, et al. Guidance for Pediatric End-of-Life Care. Pediatrics. 2022;149(5):e2022057011. doi:10.1542/peds.2022-057011
6. Wender E, The Committee on Psychosocial Aspects of Child and Family Health. Supporting the family after the death of a child. Pediatrics. 2021;130(6):1164–1169. doi:10.1542/peds.2012-2772
7. Schonfeld DJ, Demaria T, AAP Committee on Psychosocial Aspects of Child and Family Health, Disaster Preparedness Advisory Council. Supporting the grieving child and family. Pediatrics. 2016;138(3):e20162147. doi:10.1542/peds.2016-2147
8. Mills TA, Ricklesford C, Cooke A, Heazell AE, Whitworth M, Lavender T. Parents' experiences and expectations of care in pregnancy after stillbirth or neonatal death: a metasynthesis. BJOG. 2014;121(8):943-950. doi:10.1111/1471-0528.12656
9. Vollmann SR. A legacy of loss: stories of replacement dynamics and the subsequent child. Omega (Westport). 2014;69(3):219-247. doi:10.2190/OM69.3.a
10. Schmitz K. Vulnerable Child Syndrome. Pediatr Rev. 2019;40(6):313-315. doi:10.1542/pir.2017-0243
More Information
The following are some English-language resources that may be useful. Please note that The Manuals is not responsible for the content of these resources.
These resources provide information about support for parents, caregivers, and siblings after a child dies:
