What happens at the moment a disability is announced?
For doctors who specialize in disability, this announcement is the first therapeutic act for the child and family. It demands time, availability, patience, and deep understanding. How it is delivered will mark the family for years to come.
Today's physicians and medical teams are better trained than ever before. Yet for every parent, the memory of the moment they learned their child was disabled remains etched in profound grief.
Suddenly, parents must absorb a terrible truth: everything they had planned and hoped for their child has been shattered. In an instant, everything changes. The uncertainty of illness, the unknown future—these terrify.
The doctor's role is to soften the shock, to explain, reassure, and inform—all while bearing their own deep suffering at delivering such a diagnosis. The physician, too, dreams of a healthy child for these parents. They feel personally implicated in the family's pain. Often they grieve alongside the parents.
What do parents feel?
Parents speak unanimously of shock—a kind of paralysis—even when the doctor has taken time and spoken with great gentleness. "I was devastated," they say. "I found myself in darkness. I couldn't understand anything." It is crucial to understand: this initial devastation is normal, physiological. When any parent receives such grave news—as in grief—they pass through successive stages, each lasting a variable length of time (sometimes many years). After the initial shock come denial, anger, sadness, and finally acceptance, before new plans can be imagined.
Do mothers and fathers react the same way?
In a couple, each person travels their own path at their own pace. Often the parents are not at the same point: one has already accepted the child's disability and is ready to mobilize all their energy to organize their life together, while the other cannot yet imagine the future.
I remember a father who began planning how to bring his disabled child home while his wife was still in revolt, speaking harsh words that completely shook him. Suddenly he did not recognize his own wife—another layer of pain. The young mother, for her part, felt utterly misunderstood.
Each partner's suffering deepened, compounded by overwhelming guilt. When we were able to reassure them that this differing reaction was normal and common, the young couple found peace. The mutual incomprehension vanished.
How can a doctor help parents from the very beginning?
Professor Rhéthoré always begins by taking the child in her arms. She looks at the baby, speaks to them, and gradually invites the parents to join this "dialogue." Only then does she speak with them about their concerns and the suspected diagnosis.
In this first meeting—which must take all the time necessary—not everything can be said at once. But the main features of the condition should be explained as clearly as possible. The causes must be clarified, and parents must hear repeatedly that they bear no responsibility for the disability. Yes, the limits imposed by the condition must be named. But equally important: the doctor must emphasize the child's capacities, the role that family and friends will play. This child will make progress at their own pace, and with difficulty, but they will progress if supported, loved, and respected for who they are. In this, they are like every other child. There is more than a diagnosis here; their gifts and their need for love must be recognized.
The doctor helps parents envision, then build, a future with their child—a future different from what they had imagined, but real, with its own difficulties and many joys. The physician becomes a steadying support, someone parents can lean on. They must be firm and reassuring, yet full of compassion. This balance is hard to find.
"Between parents and doctors shaken by diagnosis, a path should open: dialogue, information, trust. So that parents become capable of building a future with their child."
How do we fight the loneliness and anguish parents experience?
Parents must know they will not be alone. Specialists, associations, dedicated services—all stand ready to answer questions, offer counsel, provide support. Other parents who have faced the same struggle bring their own experience and hope.
From the very first meeting, the doctor should provide names and addresses, encouraging parents to reach out immediately. It is not good to remain isolated. It is essential to be able to express one's suffering and difficulties—things one often cannot speak of with close family for fear of burdening them further. This is why connection with people "outside" the family, trained in such listening, is invaluable.
Parents also need help learning how to tell siblings, extended family, and neighbors about the disability. This phase causes real anxiety; they fear causing pain to those they love. Siblings deserve the truth, spoken in simple language suited to their age—the same words they can then use with schoolmates and teachers (who should be informed). Older siblings often benefit from attending some of the meetings parents have with support teams, so they can hear the same truth from an outside person, about the condition and its possibilities. They find reassurance in learning that real support groups exist. They have space to ask questions they might not dare ask their parents.
Grandparents, too, need guidance. They do not know how to help their adult children.
In these painful moments for everyone, it is finally the child themselves—recognized as a person of full dignity, rich in potential despite their limits, rich with love to give and receive—who will help all of them commit to building a future together.
Edited by M.V. Puiseux, 2006
(Ombres et Lumière, no. 15)