The first encounters
Professor Marie-Odile Rethoré
Member of the National Academy of Medicine
Medical and scientific director of the Jérôme Lejeune Institute
During his life in the womb, the child is in complete symbiosis with his mother and, fortunately, most mothers spend that time building up a relationship with their baby thus enabling him to grow up and become not just any man or woman more or less performing but the man, the woman that he/she truly is; a unique being the same as each one of us and, therefore, irreplaceable.
During the ultrasound scan everyone can see the little one of whom no one knows anything about apart from the fact he is alive because he is moving. An incredible experience for anyone present. Some spontaneously open up their arms to welcome the child but they are going to have to learn patience, and this is just the beginning! As for the mother, she doesn’t need any sophisticated techniques to know that he is truly alive. She can feel him living inside her. After twelve weeks of pregnancy, she started to feel the baby move inside. First, very gently and then faster and faster and more and more vigorously and in ways and moment he chooses. He is the one who decides when to turn over, start kicking, suck his thumb, jump for joy when he hears his parents telling him they love him or when he perceives music of which he knows the rhythm because he has heard it so many times. His life belongs to him and his creator only, and he is well determined to claim this right throughout his whole existence.
All good things come to an end, and the day comes when the child decides he wants to become an individual of his own. By giving birth, his mother brings him into the world, offers him to the world. It is our duty, as adults, to make sure that, during his whole life, this world respect his dignity as a man in all the various aspects of his personality. Nothing should be done if, even if it means renouncing to projects, programmes or interventions sometimes proposed with the best intentions in the world but which risk hiding the reality in order to satisfy someone else’s own desires.
The couple of days spent in the maternity ward are, for the mother, a privileged moment in which she get to know the child with whom she has been living for 9 months but still doesn’t really know. The same goes for the child because he doesn’t know the people who are going to welcome him, even though he has been part of the family viscerally since the very first day of his existence because his biological “secret”, inscribed in each and every one of his cells, is the compendium of all those who came before him in his family line.
More often than not, the whole family awaits the child with joy; all the necessary precautions have been taken, the examinations undergone during the pregnancy have turned out to be normal, and the cradle is ready to welcome the baby at home. But, sometimes, as soon as the baby is born, the parents, unfortunately, perceive that the midwife or the doctor is worried. So, after only a few seconds, the earth starts spinning the wrong way, all the projects are over… nothing will ever be the same again!
Many people keep in their heart the feeling of terrible loneliness that they felt back then. “We could feel that something serious was going on but no one dared to really tell us”. It is true, that for us, professionals, these moments are not easy to go through and we don’t get used to them… luckily I would say! There are no recipes because, for each person, the pain, the anxiety, the request is different. Quite often, at that moment, we are tempted to only think of the mother, to only speak to her as if she were the only one who had to carry the child for ever. She then takes on all the suffering which, quite often, is aggravated by a feeling of guilt that she doesn’t dare to admit and makes a point of assuming it all. But it takes two people to conceive a child, and, once born, this child must also be taken on by two people! He is the incarnation of the union of a man and a woman and everything about him must be shared by both parents. This is why I always organize things in order to talk to the mother and father at the same time when we first meet, after having made sure I asked the professionals who know the family’s history for information about the family situation. If, from the very beginning, the parents aren’t helped to realize that they are both faced with the same interrogations, the same rebellion, the same sufferings, there is a risk of ending up with the same situation as a mother who called me several weeks after her child living with Down Syndrome was born: “Since the baby was born, my husband hasn’t spoken to me. I feel like he is angry with me”. Her husband, with whom I was able to speak with face to face a bit later, explained: “I was afraid to cry in front of her, she is so brave!”. For a man to show his suffering might be a way to show his wife she is not the only one to suffer, that the child is not only hers but both of theirs. Realizing this from the very beginning is quite necessary and will help her to overcome all temptation of symbiosis with the child.
It seems to me it is all about taking enough time to get them both to see things the way they are, speaking with simple words, saying what we know and no more than we know and not hesitating to say so when we don’t know. Answering questions even if they were hardly formulated but without saying more than what was asked. Always saying the truth but never the whole truth at once. Remaining attentive and bringing the parents into saying, themselves, the words they are afraid of hearing from us. This way the truth won’t strike them so harshly, annihilating all hope, and won’t be received as a definitive condemnation. Said at the time and with the words chosen by them, it frees the parents from the fear of the unknown, of waiting for the diagnosis. You then just have to wait for time to do its work. The only urgent thing that needs doing is the creation of an effective and discrete network of welcoming people surrounding each member of the family because, for each one, the demand is different.
What should one say to these parents faced with this little being, their child, who « isn’t like the others »? It seems to me that the essential thing to say is ”don’t be afraid”
« Don’t be afraid » of speaking about your anxieties, your rebellion, your dismay, your feeling of guilt. Keep well in mind that no other parent is better prepared than you are to be the father or mother of this child. Don’t hesitate in asking questions about the disease of your child, its evolution, the risks of it reappearing in the family but, also, questions concerning your everyday life. Don’t look around on the internet too much, you would only find a lot of information given out in more or less comprehensible terms that would only increase your fear of the unknown!
« Don’t be afraid” of loving your child, of adopting him every morning when starting a day that might be quite agitated (I am thinking of parents who have children with behaviour disorders) or the monotonous repetition of every day preceding this one (I am thinking of parents who have bedridden, totally dependent children).
« Don’t be afraid » of being happy with him, of telling him so, of showing him. Share with him the joy of his progresses, his discoveries. Let him live his life as a child by forgetting all the good advice and rehabilitation techniques; let him try things out for himself; let him discover the world and rediscover it with him. Believe in him, in his capacity to progress but, also, in his capacity to love. Love him and let yourself be loved by him!
« Don’t be afraid of hating his disability », his disease, don’t be afraid of crying because of it… You know, God isn’t asking us to be heroes… He is asking us to be saints and it is not at all the same thing!
« Don’t be afraid of saying out loud the rights of your children. It is your duty as a parent and it is our duty to help you. Alone, things aren’t easy… one quickly gets lost in paperwork. But you are not alone! If parents’ associations didn’t exist, they would have to be invented right now… but they do! They are, of course, no more than what the parents who compose them are. The people in charge are quite often the people who invented them. We could never thank them enough for what they have done but we now need to start thinking about their succession.
But what can one answer when receiving this kind of call: “when you see your child bang his head against the wall, bite his lips or fingers, it is difficult to explain what you feel using “peaceful”, everyday words… It’s unbearable not to be able to change anything in this child, to not be able to truly understand our loved ones overcome by the events… but is there really anything to understand! And, of course, there are the difficulties within the couple, with the brothers and sisters, the impatience, the banging doors, the impossible holidays…” It is true, one gets the impression that for some people nothing can be done; nothing to do apart from, maybe, very small things without, of course, forgetting the power of a smile or a welcoming look. It doesn’t radically change the situation but it can transfigure it.
It seems absolutely unimaginable that the father may come home to his elder children, who are quite often being taken care of by the grandparents and who are waiting for him impatiently, without them noticing something very serious is going on. Children have antennas! They feel when their parents are preoccupied and need to know why. So, even if he can’t stop himself from crying, the father must tell them what is going on, with very simple words. He must, of course, take into account their age, the seriousness of the disease of the baby and the vital risk, if there is one. One of the elder brothers of a family once told me what happened with a heavy heart: “Dad was very happy when he left for the maternity ward with mum and then, when he came home, he wasn’t talking. It was as if he was in a bad mood!” Poor daddy, he wasn’t in a bad mood but he had just been told his little one had Down Syndrome and urgently needed to be operated on because he had a duodenal stenosis and nothing could come out of his stomach. If the father manages to say, even through tears, the name of the disease it won’t be a source of anxiety. “Why did you choose a broken little brother?” once said a big sister in front of me, her eye very dry, holding tight against her heart her favourite doll she loved so much it was completely disarticulate! Seeing their father cry when they know why he is crying, enables them to manifest their tenderness and make him understand he is not alone “Don’t you worry dad, we’re here. We’ll help our little brother even more.” said an older brother after having a long discussion with his father.
The same goes for the grandparents who had been waiting for the birth with an immense joy and who had also made a whole lot of plans. Apart from exceptional situations and painful and hard as it may be, they must be told what is going on. If they are not told at once, it will become more and more difficult to do so and the family bonds may be distorted or even broken. Thanks to their tenderness and their life experience, grandparents can do a lot so that the balance in the family is respected. Many, fortunately, know how to be there whenever and for whatever is needed while remaining in their own place.
To the nanny or person who is not a part of the family and who will be looking after the child during the day, the relevant information must be given with very simple words and without going into unnecessary details. What is most important is saying how you do things with the little one in the family, his habits, what calms him down, what scares him, the difficulties regarding his character, the sufferings he has gone through, the family difficulties… All this while respecting the secrets of the family’s intimacy and, if possible, without the child being there… After all these adjustments, which may need to be gone over several times, these people all need to be presented to the child and, maybe, not be left alone with him without being given some time to adapt.
When the diagnosis is known before the birth, the family must call the baby by his name and not by the name of his illness when speaking of him. It is not Down Syndrome, a cardiac, a microcephalus that is expected but Pierre or Gaëlle. An older sister, to whom no one had spoken about the disease of her little brother, arrived at kindergarten with the doll she had found, the day before, in the cradle when the baby arrived home. Gently putting the doll down on the teacher’s knees, she said, smiling: ”I wonder if the doll has got a bit of Down Syndrome”. The teacher, who wasn’t aware of anything, called the parents. They were astounded because, thinking it would protect their little girl, they had done everything they could so that she wouldn’t know. The tenderness she had shown towards the doll suggests she would know how to take care of her brother so that he would be happy and proud of himself. The best is to speak of the fragility of the little one who is turning up at home taking into account the seriousness of his pathology but, also, of course, the age of the brothers and sisters.
If the child has to spend some time in a neonatology ward because of his state, the mother comes home, alone… An incredibly painful separation for the mother, who feels dispossessed, as well as for the child, who feels abandoned! Great progress has been made in hospitals to overcome as best as possible the consequences of this separation: wards open for parents 24 hours/day, efforts are made to involve the parents in the baby’s medical care and give them a real place while respecting medical exigencies: care given alongside the nurse, skin to skin contact between the parents and the child…”the child, even premature, recognizes his parents”, remarked a paediatric nurse from a hospital in Paris. “He reacts to the sound of his mother’s voice. He misses her but calms down as soon as he feels his mother or father caressing him.” A mother who felt completely unarmed and incapable when she was with her baby, so fragile, was telling me that the paediatric nurse had told her that, at the end of the day, she was the most competent person: “When he cries, even if I do my best to reassure him, he carries on being agitated. You come over to the incubator, call him by his name while stroking his hand, he calms down, and goes to sleep.” So, as would have said Pope John Paul II to this mother: “Don’t be afraid”. This little one needs you, maybe more than he ever will! If the parents leave their child in the hands of the carers, as competent as they may be, the baby will be a stranger when he gets home. From the very first day, you must prepare to go home and always make sure the child is fully part of the family. If possible, you can put a picture of the family over the incubator or cradle, “build” a privileged space near the bed where you can get together as a family, as if it were home, and speak about what is going on over there. Conversely, the parents should take a picture of the little brother, of his bedroom or the hospital back home. If needed, they can ask their older children to help prepare the clothes they will be taking to hospital.
If, for one reason or another, and it is not for us to judge, the parents decide to temporarily or definitively give their child to an institution, we, professionals, but also members of the family, friends, communities to which they belong, all of us, we must be present to avoid them getting trapped in situations that very quickly become impossible to get out of. This is how parents, who had given their child to a nursery before taking the decision of giving it up for adoption or not, told their elder children, the whole of the family, their friends and neighbours that the little one had died and that it was better that way because he would have been disabled his entire life. These parents went to see their little baby every day at the nursery and, when they got home, they had to answer the many questions regarding the death of the child. When they could no longer cope, and one can easily understand why, they finally came to see me. I advised them not to carry on down this road and agreed to talk to their older children, who were 4 and 15 years old! In the simplest way I could, I told the boys that the doctors had panicked when faced with this sick baby, and that the parents had concluded, wrongly, that he was dead. I added that the little brother was going home soon, that he was fine but had Down Syndrome. I explained what it all meant, and together we went over how they could help him. It was not an easy thing to do, but it was probably nothing compared to what they went through when they had to tell their friends about the truth!
It is important to help the elder children tell their friends about their different brother or sister. It can prove difficult for some of them but it is necessary; otherwise, they could end up not daring to invite their friends who “don’t know” and get themselves into impossible situations. I don’t know if you saw, a few years ago, the film: “Le nid tombé de l’oiseau” which relates what a 15 year old big brother went through when he went to a shopping centre with his little sister whom he had been asked to look after. Spotting a friend who “didn’t know” he left his sister on her own and went off to see him. The friend, spotting the little girl alone and in tears, asked him if he knew her. “I don’t know who she is” he answered and ran off. Back home, in tears, he told his parents what had happened. It took him a long time to get over it!
With friends, colleagues from work, and neighbours it is best to act in the most natural way possible and to follow your heart. One realises very quickly that it is quite often the child himself who does most of the work and intuitively knows how to unravel delicate situations.
Giving birth to a child doesn’t mean you can keep it to yourself, tuck it under your pillow so you can protect it from all the difficulties of life. On the contrary, it is about presenting and offering him to the world, and making sure that the world is worthy of him, but it is also about making him want to discover the world his own way, at his own speed. It is about enabling him to build up his confidence by letting him live his own experiences. It is about being by his side, tenderly and firmly; not doing things for him but discretely, respectfully helping him along. It is about shouldering him, through his discoveries, so that he may see himself for what he is and not feel shadowed by those who do better, are faster… After the early cocooned years amidst his family, the child needs to meet other children at the nursery or the nanny’s to build up his own personality. He needs to be confronted to a different authority from that of his family, to submit himself to collective discipline in which each person has his own place and must be respected. He needs to meet children who are as fragile as himself. Thanks to this very open education, the child will progressively understand that he is not the only one who needs others and won’t enter into some kind of sterile selfishness which is a source of suffering.
Entering into primary school is a big day for the child, but it might be even more so for the parents. This is a step in life which needs to be prepared long beforehand. You mustn’t hesitate in asking for help, for advice. This is why I will now give the floor to Ms. Brisbrouk who has had a lot of experience, and I thank her in advance.