Breaking the news about disability: on the evolution of medicine and attitudes – Dr André Mégarbané

We no longer view maternity as we did barely fifty years ago. Many of the mysteries of creation, not only those pertaining to fertilisation but also the maturation and the physical and moral beginnings of the human being, have been laid bare. One example of this is that from the 6th month of pregnancy, we already know that the child’s hearing is functional. He hears external noises, recognises the voice of his mother and distinguishes his father’s voice from other men’s. At the same time, birth control is available to everyone. This desire to control birth is essentially linked to medical progress, and thus to lower mortality rates.

Two or three centuries ago, two out of three pregnancies were to replace stillborn babies or infant deaths. “I have lost four or five of them” wrote Montaigne, who had lost count. Likewise, offspring were an instant source of income and a labour force that was soon ready. Today, every child born has a high chance of survival. The education of the child demands more time and care, and all couples aspire to a certain economic well-being.

When a couple decides to have a child, the well-planned event becomes a source of investment for the couple. When only an embryo exists for us, outside the couple, for the mother, it’s already a child, her own unique baby. Throughout the pregnancy, an imaginary baby comes to life. Imaginary because, in anticipating its future life, the couple conceives it according to its own criteria and, what could be more normal, in perfect health.

A lady of a certain age, seeing her granddaughter’s continual fear that her newborn would suddenly die or become seriously ill, pointed out to me the difference between her mentality and ours, as a new generation. In their time, having child with a disability never occurred to them; today, we think of the worse first and foremost. This reaction is aggravated by everything we hear on the radio, read in the papers and see on the television about genetic diseases, the discovery of genes, etc. An ultrasound can reassure, since in most cases, it lets the parents reconcile the dream child with reality.

When the child appears at the end of the umbilical cord, he has already lived: he has a past, and a history; the past and history of his relationship with emotions, fear, well-being or discomfort with his mother and his surroundings. He now has to start becoming independent and build relationships, communicating with other independent beings. Birth is therefore not the beginning of life, but a reconversion. Instinctively, the mother gently leads the child towards the total cutting of ties. Her voice, her skin, being rocked in her arms, nursed snugly against her breast, break the attachments without brutality in the continuity of an ancient dialogue. Françoise Dolto evokes brilliantly the absurdity of the moment of madness that advised mothers not to rock their children back to sleep but to let them cry… This would shatter the link that was everything in the child’s life, truly a disaster.

The revelation of diagnosis – Pr Marie-Odile Rethoré

I know, because I experience it often, just how uncomfortable it is to announce a disability. I agree, there is no right way of pronouncing the terrible words that not only involve the life of the child, but that of an entire family, knowing that nothing will be the same for anyone from now on.

Lots of parents complain about the solitude they experience at the time of their sick child’s birth, of the silence kept by the professionals. “They said nothing…”. While this may not be completely true from an objective standpoint, it is, however, how they experience the event. But how can you say the unacceptable and how do you receive the message with a shattered heart?!

With the help of several physicians, we collected the opinions of some one hundred parents of Down syndrome children from all over France monitored through the specialised consultation for chromosome anomaly diseases directed at the time by Prof Jérôme Lejeune at the Necker-Enfants Malades hospital in Paris.

We handed them a questionnaire to fill in at home, as a family, focusing on how their child’s illness was announced to them. (Statistics from 1996).

In 57% of cases, they were told within 3 hours of giving birth, either in the labour room when the mother was more often than not alone after just delivering, in the corridor to the father alone, who was then meant to announce the diagnosis to his wife, or by telephone at home or at the father’s workplace.

In only 43% of cases, the announcement was made to the couple together in the birthing room. As far as the parents remember, the interview did not exceed 5 minutes in 31% of cases, 15 minutes in 32% and 30 minutes in 25%. It was generally the paediatrician who broke the news (65%), the obstetrician or the midwife in 20% and 13% of cases respectively, mainly during the night.

Abandoning the child on the spot was proposed in 36% of cases. This proposal was more frequent in Paris than in the provinces: 46% out of 44 children born in Paris and 31% out of the 54 children born in the provinces. Until 1975, abandonment was only proposed for 25% of births. This frequency rose to 47% between 1986 and 1990. The shorter the interview, the higher the frequency of an abandonment proposal: 48% for interviews lasting less than 15 minutes, 24% for durations ranging from 15 to 30 minutes.

Two thirds of the families given the abandonment option have kept painful memories of this moment. They have the impression of having been placed up against a wall with only one way out … abandonment, forgetting the “Mongolian” child, who would be stupid for life, pointed at in the street, and who would grow up ugly, a burden too heavy to bear that would hamper the other children’s education and challenge the couple’s equilibrium… For three families, the fact of having put off seeing the child aggravated the feeling of rejection, and then, after making contact with the newborn, everything changed! 85% of these shocked families would have liked to have had more explanations, more information, and more answers to their questions.

The other families were highly comforted by heartfelt words addressed to them by the medical staff. Nurses and nurses’ aids were all, irrespective of the family, praised for their kindness and handling of the Down syndrome baby.

The arrival of the sick child brought the parents closer together in 74 families, and drew them apart in 10. In 70% of cases, the parents say they were helped in welcoming their little one by the love between them and by certain members of their family. More than 2/3rds testify that a Down syndrome child gradually enlightened them with a new vision of life, without saying which, and a greater openness to the world’s problems: poverty, hunger, disabilities.

None of the families questioned regretted not having abandoned the child. To the question: “Who helped you most to welcome your child?” 79% of parents answered that, finally, it was the child itself who helped most of all!

Giving birth to a disabled child is infinitely painful, and nothing or nobody can console this pain. Those in charge of supporting the parents through the experience, especially at the outset, carry great responsibility. As we have seen, the future of the child and the harmony of the family greatly depend on their attitude.

The object, I believe, is to bring the couple, taking the time it needs, to see things the way they are, to talk about them with simple words, to say what we really know and not hesitate to admit it when we don’t know, to answer questions even when badly expressed but without going further than what’s being asked. Telling the truth, but not necessarily all in one go. Staying attentive and encouraging the parents to say the words they are so scared to hear themselves. Like this, the words will not fall like a guillotine blade, definitively shattering any hope and it will not be received like a sentence. Pronounced by the parents, at the time and in the terms chosen by them, the truth will release them from anguish and uncertainty, from waiting for the dreaded diagnosis.

Becoming aware of the child’s illness in the family – Pr Marie-Odile Rethoré

Nothing can be settled at a deep level in a single meeting or even over several days. Time must be left to do its work. The only urgent thing to do is to create a supportive network that’s efficient and discreet around the family or more exactly around each member of the family since demands and anxieties are different for each one.

Parents are anguished at the idea of telling their elderly parents, all those Nanas and Grandpas expectantly awaiting the arrival of the little one, the child who was going to share its immense life force with them. Some young parents lack the courage to do this and leave the grandparents in the dark… Little by little, news about the baby ceases, answers remain vague, visits stop on the pretext of the wrong reasons, and ties unravel.

While it’s true that grandparents suffer intensely, let’s not be scared of relying on them. Their experience of life is vast, and they have undoubtedly already known what suffering is. They have learnt patience, listen well, and have time on their hands. So, many of them are ready and willing to back up the parents for a few hours, or a few days (even for a few years) and care for the disabled child or its brothers and sisters, depending on the needs of the moment. They are eager to listen, understand, console, and learn. I’ll never forget the grandfather who, using the end of his walking stick, showed his grandson how to plant a rosebush, and who despite his illness, was able to get down on all fours.

I saw Leila again, still laughing at the stories her grandfather used to tell her. She’s 30 now and it’s her who brings the groceries back to her Nana and Grandpa, now quite elderly!

Grandparents shouldn’t be afraid of proposing their services, of letting themselves be loved, of admiring their grand children. They will certainly be painfully missed when they go. It will be the first experience of death for many of the children, who are not any more disabled than we are before this great mystery, and perhaps even less so judging from some things I’ve been told. When Saidé understood that she would no longer see her father again with her own eyes, but that she could be with him again at any time as a living memory in her heart, she ran to her mother’s arms saying “Mummy, Saidé’s here!” She was her mother’s pillar of fortitude…

Brothers and sisters, no matter how they’ve been educated, shouldn’t be ashamed of being happy, healthy and doing well at school. They shouldn’t be ashamed about living their lives, bringing friends home, going out, loving, starting a family after talking to their parents about it and, if necessary, with a doctor specialising in the illness afflicting their brother or sister. Neither should they be afraid of loving the child, helping him/her, getting him/her to do things the parents would be afraid of teaching him/her (riding a bike, swimming, skiing, horse riding, etc.) and, above all, they should help him/her to acquire and keep a sense of humour, to laugh out loud when something goes wrong, to dare speak out even if he/she articulates badly or stutters. May they be his/her advocate to the parents, his/her educators. May they help their parents during the change to adulthood. May they help cut the apron strings, but, here again, with humour!

The father’s voice – Pr Marie-Odile Rethoré

The father’s voice is rarely heard in the daily experiences of Down children’s families. We have to admit that the father is rarely allowed to speak… let’s hear what a father said soon after his daughter was born: “It’s a well-known fact that the mother brings the child to the father and the father to the child. These introductions are all the more necessary when the child is ill! In the days following its birth, the father, completely beside himself, finds his bearings again as soon as he sees his wife take the baby in her arms”.

After that, there’s not really much else to say. The same distress is experienced in both the man’s and the woman’s heart, but expressed differently. The mother holds the baby tightly against her and, in performing this gesture, she makes it her own to the depths of her being, including its illness, which is now her business. Often, the father doesn’t know how to cope. He is almost afraid of the fragile little being and his disarray is perhaps all the more poignant because of this fear. It’s by observing his wife that he discovers the gestures that make him into the daddy the child needs so badly to develop. “The father’s heart is educated by the mother’s love for her child beyond anything you can imagine”, this very same father told me.

In this time of great distress, you have to talk. I remember what a mother once said to me, in tears, a few weeks after the birth of her baby: “since the baby was born, my husband no longer speaks to me. I feel as though he resents me”. In fact, the husband didn’t dare speak to his wife because he was afraid of breaking down in front of her and the other children. Rather than showing his distress, his revolt, his sorrow, the man had built a wall of silence.

Showing one’s sorrow, even with tears, is, perhaps for a man, a way of showing her that she does not suffer alone but that her pain really is shared and that the child is nor hers alone, but both of theirs.

I’m going to let a father conclude, Général de Gaulle to be exact. His daughter Anne never left his thoughts, even in the darkest days. In May 1940, he wrote: “Anne? Yes, her birth was a test for my wife and me. But believe me, Anne is my strength…” Anne died aged 27. At her burial, de Gaulle said: “Now she’s like everyone else”.

The young person’s identity – Pr Marie-Odile Rethoré

A young man came to consult, Abdallah, a Down syndrome child I have monitored since birth and one who thinks a lot. Abdallah had just experienced heartbreak: one of his friends had told him the day before: «You know, now that I’ve seen your mother I know she’s not really your mother because you’re a Mongolian and she’s not”.

Abdallah has always known he is disabled, that he’s not like the others and he suffered just like we all suffer from our difficulties. But what he could not accept was that his mother, who had always been his centreline, may not be his mother… No, not that!

So I saw Abdallah for an emergency appointment – because it really was one – and I tried to explain the situation to him.

I showed him his parents’ chromosomes. We counted them together and he saw that he had one more than they did, 47 instead of 46, because he had three chromosomes 21 instead of two. An extra pair that was responsible for part of his woes. I told him how we could see chromosomes with my microscope but that we couldn’t read the secret hidden inside them. We need other instruments and other techniques used in molecular genetics to find in each child parts of the secret hidden in its mother’s and father’s and in each of their four grand parents’ chromosomes. He soon understood that he definitely was part of the family!

I saw Abdallah again the following year. After asking his mother to leave the room, he asked me: “please tell me, when I’ll be dead will I still have my extra chromosome? Or will we all be the same?”

We talked at length about the secret inside him, about his very own secret that makes him his parents’ child, connected to them forever, and the unique and irreplaceable being named Abdallah who has never existed before since the world began.

That we are both unique beings from the moment of our conception and a link in the chain that began with our first ancestors and continues down through the ages, generation after generation… This is what genetics at its highest can teach us!

The link our parents gave us, which connects us to our children is there, in every one of our cells, our whole life long. They’re our roots! Roots that anchor our personality within our family, our country, our race. The link remains, no matter what dramas and family break-ups life may bring.

No, nothing is ever completely lost. This link is never broken. We can always pick up the link at any time and become…fully ourselves, fully sons and daughters! Similarly, those parents who are grieved to no longer have news from the one who remains “their little child”, can find that intimate link deep inside of themselves. This link remains beyond death. It is true that, what gives me life today is the same thing that gave life to my parents, my grand-parents. How could I forget them?

Have no fear – Pr Marie-Odile Rethoré

The job of parents is, without a doubt, the most difficult of jobs, and all the same, there is no training that provides us with the right to transmit life! It isn’t easy when everything, at least apparently so, is going well, but what then when, right from the start, there is an accident, a disease or a genetic anomaly? Of course, genetics provides us with new proof every day. This child is still Nicolas, Jean, Nadia, man and woman, whole and unique and therefore irreplaceable like you and me. However, for this child, the disease is for life and our help will be needed for life!

No parent, no father, no mother has ever chosen to give birth to such a fragile child, and therefore such a precious, complex child…who leads you into an adventure that you hadn’t ever imagined, suddenly throwing everything into question, totally upsetting the hierarchy of your values, cutting you to the quick, reshaping you totally, every day, and it’s never ending. Parents of Down syndrome adults won’t contradict me!

However, remember this! These children never asked us to become slaves, for us to give in to their whims, or that the whole family should live at their rhythm. Heroic parents, who sacrifice themselves ceaselessly for you and who, from time to time, despite their efforts, make you feel it. This is not what is being asked of them!

In fact, the child asks to be accepted just as he is, with his innate qualities (and there are many), and weaknesses (and there are many), the condition (which is real), to be loved for him/herself, truthfully, and not condescendingly or through pity, the child is asking to be guided his/her whole life long, and for their dignity as a human being to be respected.

As for us professionals, we have chosen our careers; we have been trained to accomplish our tasks. Parents ask us not to cry with them, but rather to take them by the hand, to think for them. Essentially, they are asking us to be competent in all senses of the term; to do our job properly as we do, and we know very well that if we stop looking, learning, working, we would no longer be credible. However, these skills also presuppose that we also have the courage to accomplish our task, to get totally involved, body and soul, and to experience the relationship with the child, the parents and the whole family like an alliance in which each person, from their own places, has their rights and duties.

We must be there to keep a lookout with them, to see things as they really are, to help them to say, using the terms chosen by them and at the moment it becomes possible for them, the words they fear to hear us pronounce. Our job is to be there as a listener, to support their new awareness, which just cannot happen in the space of a single instant.

What can we say to them about this little child, their child, who’s “not like other children”? The essential message, I believe, is “don’t be afraid”.

Don’t be afraid of expressing your anguish, your revolt, your disarray. Don’t be ashamed to cry, don’t be scared of saying how much you suffer. Get it into your head that no parent is better prepared than you to be a parent to a child “not like other children”. Don’t be afraid to ask questions, straight from the heart. Questions about the illness, your child, its development, the risks of the illness reappearing in the family, and also the questions about daily life.

Don’t be scared of loving your child, of embracing him every morning when you start a new day, which may turn out to be quite hectic… or just another day like the ones before.

Don’t be scared of being happy with your child, and saying so, showing it, sharing with him the joy his progress brings, his discoveries – and they will be tremendous! Let him live his child’s life (by forgetting all the good advice and rehabilitation techniques); let him have his own experiences, let him discover the world, in his own way, and rediscover it with him; believe in him, in his capacities to grow, and his capacity to love. Love him and let yourself be loved by him!

But don’t be afraid of hating his illness, his handicap; don’t be ashamed of crying because of them. Don’t be afraid or ashamed of claiming this child’s right loud and clear. That’s your duty as parents! It’s not easy alone, and you soon get lost in paperwork. But you’re not alone! If parents’ associations didn’t exist, inventing them would be an urgent matter. But they do exist! They are only, of course, the sum total of the parents making them up. The people currently in charge of them are often the ones who started them. We can never thank them enough, but we perhaps should start thinking about passing on to other torchbearers…

Some, believing they are doing the right thing, tell parents: “at least this one will stay at home with you until you’re old”. No way! The child must be loved enough and in such a way that it can be happy without us, all by itself. How many parents find it hard to let their child take wings and fly!

Parents are not alone – Pr Marie-Odile Rethoré

It is up to the parents, whenever possible, and the family and friends, to welcome the little one and support him/her through is/her childhood to enable him/her to develop his/her personality, to become who he/she really is, a man or woman who has been entrusted to us for a time, not to hold tightly on to, but to allow it to realise the mystery of its humanity.

While running this gauntlet – and it really is one – parents are not alone or, more exactly, they should not be alone. All his younger brothers and sisters, no matter what their situation may be, should be told: “don’t be ashamed of being happy, healthy and doing well at school. Don’t be ashamed of living your lives, bringing friends home, going out, loving, starting a family after talking to your parents about it and, if necessary, to a doctor. Neither should you be afraid of loving the child and helping him/her. Help him/her to acquire and keep a sense of humour, to laugh out loud when something goes wrong, to dare speak out even if he/she articulates badly or stutters. Don’t hesitate to be his/her advocate to the parents, his/her educators. Help your parents during the passage into adulthood. Help him/her cut the apron strings, but, here again, with a sense of humour!”

Some parents, some families can’t welcome a Down syndrome child… It is not for us to judge them. Currently (1996), in Paris, 25% of Down syndrome children are abandoned at birth because of their illness … 1 out of 4! They remain at the maternity hospital, mother unknown, and the nurses give them their name…

To conclude, I’d like to deliver a message given to me by one of these children – Nada was abandoned at birth because she was a Down syndrome child with a heart condition. She knows all this. Her adoptive parents explained to her that the mother who gave birth to her was afraid of her sick heart, was afraid of not knowing how to bring her up properly, of not loving her. So, as sad as it can be, this poor mother did what the doctors suggested, because they were also scared of this illness they didn’t know how to cure. Every evening, Nada prays for her father and mother who were scared and must be very unhappy.

She also prays for the mother and father who took her into their home where there were already two big girls, both adopted as the couple was biologically sterile.

The other day, the father saw Nada through the bedroom door, left ajar, standing in front of the mirror and singing out loud: “thank you for marvellous me!”.

Capable of true maturity – Jean Vanier

I’m often struck by how sad so many normal people are. One day, “Mr. Normal” came to see me about his problems. During the visit, Christian knocks on my door. Some people say Christian is Mongolian, others call him a Down syndrome. We just call him Christian. Before I could even say come in, Christian was in the office. Laughing, he gives me a joyous hug. With a gleeful welcome, he shook “Mr. Normal’s” hand, turned around with a laugh and left. Christian is now thirty-six. He is usually happy and relaxed. He works at a subcontracting workshop and likes the community, where he feels at home.

“Mr. Normal” turns to me and says: “how sad it is to see children like that”.

“Mr. Normal” is blinded by prejudice, theories or his tears, because it is obvious that Christian is so much less dull and beaten down than he is.

Some people see Down syndrome men and women like eternal children. Some parents make them into true dolls. I’ve seen pampered adults arriving into the community, their hair slicked back, bowtie neatly in place and sometimes even wearing gloves. Treating them like this prevents them from growing up. No wonder they remain so childish.

Some feel the rejection they sometimes experience very deeply and their frustration can come out as inertia, apathy and an aversion to contact.

Others react by retreating into unstable and aggressive behaviour. In fact, in our communities, like in many other centres, I have mostly met Down syndrome men and women who developed into truly mature human beings, and even wise ones.

Learning everyday life, or autonomy – Néda Jamhoury

A few self-reliance activities include primary learning stages like body hygiene, eating, socialisation and basic housecleaning. They are aimed at all children welcomed to the centre.

From the hygiene point of view, the child first learns to control his sphincters, to stop using diapers and go to the toilet alone. Learning self-reliance will also enable the child after a while to properly wash his hands, mouth and face. He’ll then learn how to brush his teeth and take a shower. If a young child who’s able to acquire all these skills has to stay at the centre, it will be offered slightly more tricky learning activities such as shampooing his hair or cutting his nails.

As all these self-reliance activities are complementary, we try and teach them at the same time. Like this, when the child learns to control its sphincter, it also learns when dressing to pull down and pull back up trousers and underpants. As we always work from easy to difficult, while trying to image all the situations the child will encounter, we proceed as follows for dressing and undressing: take off your jacket (unbuttoning/unzipping), put on your jacket (buttoning up/zipping up), pull down and pull up your trousers, tights, underpants (undoing and doing up a belt, etc.). Like this, we hope that one day, when the child learns how to take a shower, he/she will be able to undress and even fold clothes.

In addition to dressing and undressing, we have our own programme that includes table manners, with the right way to use cutlery, setting the table, clearing up, doing the dishes and putting them away.

At the same time, we teach some children to drink from a glass, not from a bottle, while others learn to chew instead of drink liquid foods like purée.

Also, our children learn to cut bread, spread things on it, make a salad, pour their milk, fruit juice, make hardboiled eggs, fruit salad and a whole series of simple preparations to sustain them and sooth their thirst.

Socialisation aims at teaching the child to behave well within a group, institution, family and then in society at large. Here, we also factor in possible situations the child will encounter one day, like buying bread, groceries, etc., or how to behave at a medical, a visit to friends… During socialisation, the child will learn certain patterns he will then repeat throughout life.

These start with simply being polite (formulas learnt off by heart), to spontaneously correct behaviour, without aggressiveness, sulking or opposition. Of course, we give special attention to cases of aggressiveness, by trying to channel this energy into role-playing, miming, sports and artistic activities.

Simple housecleaning completes self-reliance learning and allows the child to tidy up and clean its classroom, bedroom, personal belongings and help out at home.

We work in close collaboration with the parents. I remember a child who arrived everyday with a fully peeled tangerine and grapes separated from the bunch and placed in a box by the mother. After interviewing the mother, who was persuaded that her son didn’t know how to eat or peel fruit alone, I told her the child had learnt how to peel and even remove the seeds from a citrus fruit here. How surprised she was! Ever since, she gives him whole fruit and he peels it himself.

Another mother complained that she had to spoon feed soup to her child even though her daughter had learnt to eat by herself and correctly use the right kitchen utensils and cutlery. This is why we stay in close, permanent contact with the parents, and tell them about any progress and new skills learnt by their children. They also keep us informed about what the child does right at home and the problems encountered during such or such an activity or behaviour.

Dear Future Mom

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