« First encounters » is the theme of the conference you will be giving during the ICJLD on September 20th, 2014. You will be speaking about the first encounters with people living with Down syndrome.
These first encounters will be spoken of during the days for families. Do first encounters have an important place in the life of a disabled person ?
Marie-Odile Rethoré (MOR) : The first consultations are, no doubt, the most important ones; Parents remember them perfectly. They are able to recall, ten years later, the exact same words that were pronounced then. One must remember that parents did not choose to have a disabled child and were never trained, whereas we, professionals, chose our responsibility. What is essential, is to help parents fully see their child as a human being and not simply as a chromosome too many or a missing chromosome. These consultations can sometimes go on for a long time; one needs to pay attention closely to the questions, sometimes even push the parents into asking and then only answer with simple words. The truth must always be told but not the whole truth- be careful not to say too much too fast by wanting to do the right thing…
It is primordial to address the parents AND the child (through voice, touching/caressing the child, etc.). This is the first step to recognition.
The first encounter with Down Syndrome quite often take place during the ultrasound scan. It often triggers incomprehension, surprise or even fear. These first encounters are very important, what advice would you like to give to families and doctors concerning this encounter ? The first anxieties occur during the ultrasound scans ?
MOR : Indeed, the professionals who perform the scan don’t hesitate in telling the parents about all the anomalies they notice, may they be big ones or small ones; all this so they cannot then be accused of not having said anything. Every child is unique (and therefore irreplaceable) and is absolutely allowed to not fit in with the average population concerning, for example, the length of the femur, the distance between the eyes, etc. The accumulation of all these little details are the signs which enables a doctor to foreshadow the presence of a child carrier of a pathology or a genetic anomaly. The only way to have a formal answer is to perform an amniocentesis (while keeping in mind the risk incurred by the baby). Thanks to a simple blood test of the mother, modern techniques now enable us to know the number and shape of the child’s chromosomes. During these consultations, what is most important is to speak of the child and not only of his chromosomes or particularities. I don’t hesitate in asking whether a name has been chosen; it then becomes the femur or the heart of Nicolas.
The birth of a child with Down Syndrome can lead to changes in a family. However, it is, again, another first encounter of the child with his family. Does the family need to be better prepared ? Is there a specific way of going about things for this first encounter ?
The baby and his parents: As a doctor, I start off by explaining the child’s disease to the caregivers and then I ask the caregivers for information about the parents. Then, I meet with the parents AND the baby, on their own. It is necessary to talk about the baby that I always look at and talk to: For example, I say to the child “You know, I am going to take you to meet your parents. YOU, personally, need to learn to be coveted by your parents”. I place the baby next to his mother; the father is also present. We then look at the child, together. It is essential to get the parents to see the symptoms by themselves, that they notice them by themselves and they are the ones to say when they start to feel what they are dreading to hear from me. The doctor only confirms. An always, looking at the child, touching it (voice, caress…)
Back in the family: the elder children see him: Dad left happy and came back sad. This father is going to have to tell his children what is going on with the baby. Everyone is extremely moody. It is necessary to tell the children that the baby is not ok, has a heart problem… Quite often, the brothers and sisters help out a lot.
He mustn’t be afraid of crying, just so long as the truth comes out (by adapting the words, of course, according to their age and personality).
The same goes for the grandparents. They must be told in order to feel included in the babies’ close circle and thus, very naturally, help and fully take on their role as grandparents.