Dear colleague,
You've just learned that a mother has given birth to a child with trisomy 21 (Down syndrome), and she has asked you to come at once. Now you want to know from me how to proceed. I know this situation well—I live it often—and I understand how difficult it is. You're right: there is no good way to say terrible things. These words will shape not only the child's life but also the life of his entire family, because from this moment forward, nothing will ever be the same for them.
If this mother called you, you must go—even if you think a specialist or someone else might be better suited. The specialists and others will come later, at the parents' request and with their agreement. But right now, you are the one who must answer this urgent call. And make no mistake: this *is* an emergency.
Help the parents understand that their most important task is to discover who their child is—and that only they can do this.
Your job is not to console at any cost, not to deliver lessons couched in medical language that will be nearly impossible to understand when their hearts are shattered. You are not there to make predictions, dark or otherwise.What you must do is take all the time necessary to show things as they are. Explain them in simple words. Say what you know. Do not hesitate to admit what you don't know. Answer their questions even when they can only half-form them. And tell them the truth—not necessarily all of it at once, but truthfully.
See also: How to Tell Parents About a Down Syndrome Birth
It may help to speak first with the father alone. This lets you gauge the family's emotional atmosphere and understand something of the mother's character. Don't take this moment with the father as an escape route, though the temptation will be strong. You cannot dump everything onto a man who has just been struck by a terrible blow. The testimonies we receive at Ombre e Luci show that fathers' despair, though it may look different, runs no less deep than mothers'. If he agrees, you might suggest stepping away briefly to speak alone with his wife, promising to return to both of them afterward. During this first conversation, it's best that you be alone with the parents. Certain words and gestures should have no other witnesses. You will have already examined the baby during your medical visit before the parents arrived. The way you looked at this newborn during your examination—and the physical contact you made with him—matters enormously if you want to truly represent him and, if need be, to advocate for him. You will have already conferred with colleagues and the maternity staff to understand what has been said and left unsaid, and by whom. You will have decided which tests to run and what measures to take.
In this time of great confusion, many parents want to "settle" most of the problems immediately so they can move on and resume a life they can live with. Often the decision to abandon the child—suggested and even recommended by many doctors—is made because nothing else has been offered. What we should do instead is help parents avoid making irreversible decisions. There is no rush, except to build around this shattered family a network of warm, affectionate relationships—while always respecting their privacy.
Several paths may be worth considering. If the baby is healthy and the parents wish it, he can leave the maternity ward with his mother. But you must know this: a newborn with trisomy 21 feeds very slowly in the first weeks. It is heartbreaking for a tired and grieving mother to watch her baby sleep when he should be nursing. So if the parents have no extended family or friends who can share the burden, don't hesitate to suggest a temporary stay in the nursery. During this time, the parents can rest and gather their strength. They can also gradually get to know their baby and will be better prepared to welcome him home. After the first weeks, the newborn will emerge from his lethargy, begin to feed normally, and soon will learn to watch and to smile. If the parents cannot or do not wish to take him home, his nursery stay can be extended as long as needed. The openness and capacity of the hospital staff and your own willingness will gradually make it possible to find the best solution for the whole family—without judgment, without rushing.
We must find a way to make the parents *want* their baby. The miracle of love.
We must find a way to make the parents *want* their baby.The miracle of love.
A wise person I knew from Tunisia, an active member of an association helping families with disabled children, once told me this: we must find a way to make the parents *want* their baby—the miracle of love! Grandparents, aunts, and uncles can do so much in these early days. Don't hesitate to ask for their help. They know far better than we do what can or cannot be done, especially if the father is absent or unwilling to listen.
At this moment, it may be too soon to speak of parent associations or disability advocacy groups; those labels would be too hard to accept. If it seems it might help, you could instead arrange a visit from a friend who has faced the same trial. Keep some phone numbers with you—people who are reliable and discreet, who can offer information, advice, or simply human warmth.
Rather than list institutions, propose rehabilitation programs or schooling plans, or talk about what the child will or won't be able to do—help the parents understand that their most important task is to discover their child's unique personality. Only they can do this. There is no need for scholarly books. Discover who Lucia, Paolo, and Gianluca really are. But ban certain phrases from your speech. Don't say, for instance: "These children are sweet and affectionate; they love music." Having trisomy 21 does not make them all the same.
And never try to comfort parents by suggesting that "at least this child won't leave them and will stay close in their old age." No. This child's life does not belong to the parents; it is only entrusted to them for a time. Their task is to help him flourish.
Giving birth to a disabled child is profoundly painful. Those of us who are especially called to stand beside the parents in these early moments carry a grave responsibility. The child's future and the family's harmony will depend largely on our attitude. The newborn may be abandoned "in a home for children like that" or may even be killed because his life will be deemed worthless. Or he may flourish because he is held up by the love of people who have learned to recognize the hidden treasure deep within his being.
- Dr. Marie-Odile Réthoré, 1992
(from O. et L. no. 81)