What Not to Do

When a disabled child is born, parents turn to doctors for diagnosis, treatment, prognosis.
They seek the truth, and at the same time, hope.
Marie-Odile Réthoré, a geneticist, answered questions from Ombre e Luci, drawing on her long experience as a physician and friend to many disabled people and their parents.
Doctors are often criticized for how they tell parents about their child's disability. What do you think?
For more than fifteen years, as a medical geneticist, I have faced one of the most painful duties of our profession: telling some parents that their child is not like other children. It is one of the gravest tasks our profession demands. The way this news is delivered determines the child's future. Depending on how we receive them, how we are present to them, the quality of our words—parents will leave unprepared, terrified, ready to do reckless things, alone with their suffering. Or they will leave strengthened by a hope that will not be without tears.
I have heard it so often from the mouths of discouraged parents, even years later. Now I know what not to do.
The revelation can be brutally swift, like a sentence with no appeal: "Your child is severely disabled. It's better if you don't even see him. The social worker will handle everything. Try to have another child and forget about this one." At best, parents get some vague explanation of the illness. Most often, no one bothers to order tests that would show whether the disease might appear again in the family—there's such a rush to turn the page, to act as if the child were never born.

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It's not uncommon to meet parents who live for years in dread of having another child, terrified the disease will return (a disease they don't understand, since no one explained it), when a simple test would have put their mind at ease. As for the decision to abandon the child, made in a moment of complete bewilderment—it can be questioned later, often at the urging of siblings. And the family's balance risks being shattered.

The diagnosis may be accompanied by a severe prognosis—a death sentence, more or less imminent.

The diagnosis may be accompanied by a severe prognosis—a death sentence, more or less imminent.
The diagnosis may be accompanied by a severe prognosis: "Your child won't make it to next year. Five years. Fifteen years." This year I knew a mother who spent a large sum buying toys for her son's seventh birthday because she'd been told he wouldn't reach that age. When you're counting days "because that's what the doctor said," how can parents find the courage to help the child overcome difficulty?
The child won't be educated. He'll be allowed to do as he likes. Parents become slaves to a son who soon learns he can have anything he wants. The family risks becoming a hell from which siblings escape—and often the father too.

Sometimes the illness is denied despite a mother's deep worry: "No, no—your son is just a bit slow. A little activity and he'll straighten right out." And that poor mother, who can see clearly that her son is different, swings from complete discouragement to wild hope. She goes from doctor to doctor, searching for the one who's right and all the others wrong. She's ready to believe any charlatan, ready to try "miraculous" cures. The child changes schools constantly—none of them meet his needs.

Every year children are labeled, first one way, then another: uneducable, mentally deficient, deaf, psychotic, or simply ungifted. I believe we must speak as soon as possible, explaining in simple words, without hesitation to say also what we don't know. This news, delivered directly, simply, gently, has the enormous merit of ending the anguish of uncertainty. The truth, however painful, allows parents to make day-by-day decisions as needed.
It's not about consoling at any cost, but about helping people see things as they are. It's not about delivering a lecture wrapped in scientific jargon that soon becomes incomprehensible. It's about simply describing the symptoms observed, explaining which tests were done and why, and what those results mean. Informed this way, parents can understand what steps to take.
There are questions we cannot answer: "How long will he live?" "Will the disability be visible?" "At what age will he walk, speak?" "What work can he do?"
The doctor cannot answer many of these questions because he doesn't know. Science hasn't had its final word. What seems unsolvable today may have an answer tomorrow. But above all, even when many mentally deficient children share the same condition, each child's situation is unique. Only careful observation will reveal who he is and what he can become.

What advice do you have for parents? How can they keep a disabled child from disrupting the family's balance?
The ideal environment for a child's development is undoubtedly the family. But every family is different. Some cannot welcome a disabled child because of parents' age or health, the number of siblings, housing, finances, or the severity of the child's condition. These factors—which make up a family's story—must be considered. What seemed like the best solution at one moment may not be later, as the child improves or his condition changes, as parents' health shifts, as the father's circumstances alter, for countless other reasons. At that point, the problem must be rethought, a new way forward found—one that is also not permanent.
In some cases, it may be good to place the newborn in temporary care when he leaves the hospital. A few weeks of rest allows parents to recover, to regain their strength. They'll be more ready to welcome their child, who, waking from the first days' stupor, will feed more easily. There's nothing more discouraging for a tired, sad mother than to watch her baby sleep instead of nurse.

This is the moment to set aside small disagreements, to reunite around the youngest, and to stand by the parents.

This is the moment to set aside small disagreements, to reunite around the youngest, and to stand by the parents.
Ideally, when the mother comes home from the clinic, a skilled household helper could assist her for a few weeks while she regains her footing.
The disabled child must never become the center of the family, around which everyone else orbits as best they can. Parents, siblings—no one should live by the rhythm of the sick brother. The child must gradually be integrated into the family. This is possible only if the family's center remains what it should be: the love between parents and between parents and children, and if the disabled child is carried and supported by all, not only by his mother.
Everyone can help. Grandparents especially. I know many who have enabled parents to recover through their openness of heart, their quiet attention, their material support—welcoming the child for a day, an afternoon. The support of aunts and uncles, godparents, is also essential.

What would you say to neighbors?

This is the moment to set aside small disagreements, to reunite around the youngest, and to stand by the parents. This is where we must speak of the inventions of love, and be creative.
If family doesn't step forward at these moments, the family risks closing in on itself. Parents risk becoming the child's only support. Instead, from the start, parents must think ahead to their son's future—so that one day he might have some independence.
Too many parents tell me: "It's fine as long as we're here, but when we're gone..." When the parents are gone, they will need to have built a circle of friendships around their child and helped him develop the independence he needs to keep growing.

Interview with Marie-Odile Réthoré, 1984

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