Anticipatory Grief and Congenital Heart Defects

Like any grief, anticipatory grief is complex and variable. For many people, it comes in waves. Sometimes, a person may feel fine, and other times they may feel overcome with grief. Anticipatory grief tends to involve multiple different emotions, some of can seem contradictory, and the experience of grief can change over time.

Symptoms of anticipatory grief can include:

• intense feelings of sadness, anger, fear, and/or loneliness

• trouble eating and sleeping

• difficulty concentrating

• thinking a lot about the expected loss, and imagining it over and over

• withdrawing from other people

When someone is experiencing anticipatory grief, they often go through some or all of these stages.

• Acceptance: Realizing that the future loss is going to happen, and cannot be prevented. Common emotions include sadness and anger.

• Reflection: Thinking about one's relationship and experiences with the person they are grieving. Common emotions include remorse, guilt, and regret.

• Rehearsal: Imagining the loss, and making plans for the loss itself.

• Imagining the future: Thinking about life after the loss, and picturing how a person will continue moving on.

Grieving people may not go through the stages in order, and they might cycle through the stages multiple times. Each stage can bring a wide range of strong and conflicting emotions.

While anticipatory grief can be helpful, it can also be problematic. It can cause people to:

• lose touch with the present moment

• have trouble fully appreciating the person they are grieving, but who is not yet gone

• struggle to find enjoyment and calm

Sometimes, anticipatory grief can interfere with a person's daily life. It can lead to social withdrawal, and feelings of helplessness or hopelessness. People experience severe forms of anticipatory grief sometimes resort to unhealthy strategies to soothe themselves, such as self-harm or drug use.

Anticipatory grief can also be problematic when it lasts a long time. When someone is anticipating a loss for years or even decades, anticipatory grief can shape how they interact with the world.

When anticipatory grief is severe or long-lasting, a skilled therapist can help people to find solace, enjoyment, and hope.

Parents, other caregivers, and healthy siblings sometimes experience anticipatory grief when a child has a congenital heart defect (CHD). They may feel anticipatory grief when:

• a child has an uncertain or poor prognosis

• a child is expected to lose skills or functions

• a child's health is worsening

• a child is likely to miss out on hoped-for events, accomplishments, or milestones

Every parent responds to disappointments and losses in their own way. Click below to watch videos from the Courageous Parents Network, and hear how some parents of chronically-ill children experience anticipatory grief. Please note that most of the families are managing other serious illnesses, not congenital heart defects. However, many families with congenital heart defects will recognize similar experiences and emotions.

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.

Some kids with heart defects have an uncertain or poor prognosis, and understand what is happening in their bodies. In these cases, kids, teens, and young adults can experience anticipatory grief. Young people with heart defects may feel anticipatory grief if:

• they expect to have shorter lives than most people their age

• they anticipate missing out on experiences or milestones they had hoped to achieve

• their health is worsening

• they are losing functions and skills

When families and providers maintain open and honest communication with young people, they can recognize signs of anticipatory grief, and help young people to work through their thoughts and emotions.