When parents first learn that their child has a CHD, they may enter into a grieving process to mourn the loss of the ‘expected hand’. Grief has many phases, but it is not linear. Parents may experience all phases at one time, none of the phases, or may move between phases. Know that everyone experiences grief differently. Some parents don’t grieve, while others grieve for many years.
If grief over your child’s CHD is negatively impacting your daily life or impacting the relationship with your loved ones, please seek help from your health caregivers. They can develop effective supports for you and your family.
*Parent Grief and Coping table modified from:
Drotar, D., Baskiewicz, A., Irvin, N., Kennell, J., & Klaus, M. (1975). The adaptation of parents to the birth of an infant with a congenital malformation: A hypothetical model. Pediatrics, 56(5), 710-717.
The Parent Grief Model includes reactive and active roles. Reactive roles include the parent’s potential initial feelings and reactions to a situation, whereas active roles tend to be the result of processing, understanding, and reframing of the experience, and adaptation. Active roles require that a person initiates and takes personal responsibility for their actions; this requires self-awareness and emotional energy. We encourage you to read through the model and consider your feelings, behaviors, and experience in this light. Reflect on your potential grief and coping strategies in order to navigate your own emotional response to the CHD.
Parents may use different coping behaviors. Parental coping is one of the most important components of raising a child with CHD. This is because children learn coping strategies from their parents. Coping with grief over your child’s CHD may involve engaging with the source of your grief, or disengaging with it. Parents who adopt “engagement coping” learn to behave in ways that will help their child. Engagement coping includes taking personal control, seeking resources, seeking community, and acknowledging and discussing the CHD.
Engaging requires emotional effort and energy – it is not easy – but your child’s self-esteem is worth the effort. When parents effectively cope with their grief by engaging, they help their child build resilience and resourcefulness. Parents who disengage to cope may cover their child’s hands when in public, blame others, or may avoid discussing their child’s CHD. When parents cope by disengaging, they may send negative messages to their child about their CHD.
Engagement coping can help parents convey to their children that CHD is a positive aspect of their existence and not a source of shame. This helps their child develop their own effective coping strategies. We understand engagement coping takes time and emotional effort. Your Pediatric Hand Team is here to support you.