Ambiguous Loss and Congenital Heart Defects (CHDs)

Ambiguous loss is complex, and people experiencing it often feel a range of emotions that change over time. The grief of ambiguous loss is often less linear and predictable than grief after a death. When managing ambiguous loss, a person searches for resolution and closure. They may cycle through different stages of grief, or remain stuck on one stage for a long time.

Symptoms of ambiguous loss can include:

• chronic sadness

• emotional numbness

• persistent longing

• constantly thinking about the loss, and difficulty thinking about anything else

• physical symptoms such as difficulty sleeping, digestion problems, and headache

• guilt, remorse, or anger

• feeling "stuck," like grief is not getting better

• hopelessness or a sense of helplessness

• being troubled by conflicting feelings

• a general sense of insecurity and lack of trust

• uncertainty about identity and purpose

Parents and other caregivers often experience ambiguous loss when a child has a congenital heart defect (CHD). These feelings can be hard to identify and understand, and are very individual. It is common for caregivers to feel ambiguous loss when:

• a child receives a new diagnosis

• a child loses skills or becomes less healthy

• other children and other families seem to be having an easier time

• a child or a family misses out on opportunities or fun activities

• a child is unable to do certain things that the parents had expected

• a parent cannot interact with the child in the ways they expected, or in the ways they used to be able to interact

• a child has a poor or uncertain prognosis

• parents have trouble relating to other parents because their experiences seem so different

Click below for different parents' experiences with ambiguous loss.

These links are provided as resources only. Boston Children's Hospital and the Benderson Family Heart Center don't necessarily endorse all of the information on these sites.

Many kids with heart defects feel a sense of ambiguous loss, but may have trouble expressing the nature of their grief. Ambiguous loss is common when they:

• feel like they are missing out on something

• receive a new diagnosis

• are unable to fully participate in something fun

• think about the future, especially if their prognosis is uncertain or poor

• struggle to connect with other kids who do not have the same experiences

• lose skills or become less healthy

• have to spend a long time in the hospital

When a child in a family has a heart defect, their siblings often experience grief associated with ambiguous loss. Healthy siblings often face ambiguous loss when:

• a new baby dramatically changes the family structure

• parents seem to spend most of their time and attention on the sick child

• parents spend less time with the healthy child than they used to

• the family can no longer do some of the activities they used to do

• parents stay at the hospital with the sick child

• they have trouble connecting with peers who do not have similar experiences

• they cannot do fun events or activities because of a sibling's medical care

• their sibling loses skills or becomes less healthy

• sudden emergencies make life feel uncertain

• they cannot interact with their sibling in the same way they see other kids interacting with siblings

• their sibling has an uncertain or poor prognosis

Ambiguous loss and its accompanying grief can make people feel stuck. They may have trouble accepting their present and their future, and find it hard to move forward. Through treatment, people can learn to feel positive about the future even in the face of ambiguity and uncertainty.

If you or your child is experiencing ambiguous loss, know that you are not alone, and help is available. Share your concerns with your doctor, psychologist, and/or cardiac neurodevelopmental team, and they can help you find appropriate resources in your area.

This content was reviewed by a psychologist at Boston Children's Hospital.

Developmental care is best when it is local. Families local to Boston can schedule evaluations with the Cardiac Neurodevelopmental Program (CNP). Families from other regions can use the link below to find their care team.