Parents' Grief Over the Loss of a Healthy Child

When a child is born, certain expectations come along with them: the first day of school, learning to ride a bike, and later, perhaps, having a place of their own. When a child has a chronic illness or disability, these expectations eventually no longer match reality. Many mothers and fathers then grieve for the child they had imagined and for the life they had planned with that child.

The child is alive, the child is here, the child is loved. Yet something is lost. Experts speak of mourning the healthy child or of saying goodbye to the idealized image. What they mean is an inner image that has been shattered by the diagnosis. The real child remains unaffected by this and is still loved. Counseling centers describe this moment—when parents accept a child just as they are—as a turning point that rarely occurs without grief.

This kind of grief is rarely discussed. A child who is alive doesn’t fit into what those around them understand as grief. There is no funeral, no cards, no occasion for friends to offer their condolences.

Some parents hear comments like “Be happy—at least the child is alive” or “Others have it worse.” Such comments are well-intentioned, yet they still silence the grief. Added to this is the fear of appearing ungrateful or unloving—and for many parents, shame as well. Those who grieve for the healthy child often fear that doing so would betray the sick child. So the grief remains inside. Experts call this “unacknowledged grief”: Those around them do not see the loss and therefore do not offer support.

Grief often comes in waves and resurfaces at unexpected moments. Common signs:

• a pang of sadness at the sight of children the same age running, talking, or going to school, just as one had hoped
• Sadness on birthdays, the first day of school, or other days that would have marked the life you’d dreamed of
• Anger or envy, which are immediately followed by feelings of guilt
• the feeling of being stuck in limbo because diagnoses and prognoses keep changing
• a fatigue that goes beyond the physical demands of caregiving

These reactions alternate with genuine joy for the child. Experiencing both at the same time is normal with this form of grief.

Family therapist Pauline Boss coined the term “ambiguous loss” to describe such situations. It refers to a loss without a clear conclusion. The person is physically present, but a part of the shared future is gone.

Because there is no visible end, the grieving process is harder to get started and can drag on for a long time. Boss explains that this uncertainty usually cannot be resolved. It is helpful to give this uncertainty a place and to endure it, rather than trying to get rid of it. In the case of chronic illness, every new diagnosis and every setback can trigger the grief anew. Some parents therefore experience it in waves, over and over again.

This grief rarely disappears completely. Over time, it becomes less intense and makes room for life with the child, just as it is. What helps many parents:

• acknowledging the grief—to themselves and to someone they trust. A loss that is spoken about often feels less burdensome.
• Seek out conversations with other affected parents, such as in support groups. There, the fear of being misunderstood disappears.
• Accepting conflicting emotions. Love for the child and grief over what you had hoped for are not mutually exclusive.
• Take care of your own well-being so that constant stress doesn’t lead to exhaustion.
• Keep an eye on the siblings as well, whose daily lives are also affected by the stress.

The path to acceptance comes in waves and takes time. For further reading, see the article on coping with the grief of a diagnosis.

Grieving for a healthy child is an understandable reaction to a difficult life situation. It becomes a burden when it paralyzes daily life for weeks on end, when parents withdraw completely, barely sleep, or can no longer feel joy. In such cases, support is appropriate—for example, from parenting counseling centers, social pediatric centers, self-help groups, or psychotherapy.

Rückenwind Janike guides parents through such phases in a supportive, coaching manner and strengthens them in their daily lives. is a social worker and parent coach currently training to become a child and adolescent psychotherapist; she does not make diagnoses. This service cannot diagnose or treat mental illness. Diagnosis and therapy should be handled by a medical or psychotherapeutic specialist; for children, this should be done at a child and adolescent psychiatry clinic (KJP).