In France, nearly 50,000 people have trisomy 21. On the occasion of World Trisomy 21 Day, which takes place every year on March 21,
Le Figaro
met Alice Drisch, mother of a little boy with Down's syndrome.
this handicap due to a chromosomal anomaly, and founder of the M-21 association, which listens to and accompanies the parents confronted with the shock of the diagnosis, whether it takes place during pregnancy or at birth.
Read alsoTrisomy 21: the Jérôme-Lejeune Institute, the joyful clinic
LE FIGARO.- How did the idea of your association "
M 21
", launched in October 2021, come about?
ALICE DRISCH.-
I gave birth to Isaac in March 2020. When he was born, I was faced with the shock of the diagnosis.
What shocked me was the kind of medical disinformation: when we are told this diagnosis, we are never told “
it's hard, but it will be fine
”.
On the contrary, it is always a tragedy.
I wanted to get closer to certain associations, but no one was indicated to me.
I learned about associations related to sport, school... but on the diagnostic part, I found nothing.
I started alone, on social networks, by informing myself then by answering questions from mothers living the same thing as me.
Faced with the real and urgent need to help these couples and families, it has become an association.
I chose the name “
M
” as a “
wonder
”, and 21, in reference to the presence of the third chromosome 21 – instead of two – at the origin of this handicap.
“It is important that women feel free and that their choice is made in conscience and in serenity”
What is the objective of this association?
Support parents who are faced with the diagnosis of trisomy 21 by listening to them via a free telephone line.
The idea being to listen, inform, support, without influencing any choice: we are not a “
profile
” association.
We have also supported women who have chosen to end their pregnancy.
For us, it is important that women feel free and that their choice is made with conscience and serenity.
That is to say ?
Today, women are systematically offered to terminate their pregnancy in the event of a positive diagnosis, without explaining anything.
The risk is to make this choice in fear.
We would like this choice to be made with all the cards placed.
I recently had a three month pregnant woman on the phone.
At the end, she confided to me that she did not feel capable of raising a child with Down syndrome, but she thanked me because our call had brought her peace of mind.
All women are not called, for the balance of their couple, their family, to raise a child with Down syndrome, but some need, whatever happens, support.
Others, on the contrary, told me to make the decision, calmly, to keep the child.
In any case, we are doing a lot of work which allows there to be less trauma in the face of the diagnosis.
In the long term, another objective is to work hand in hand with the doctors, so that in the event of an announcement of the diagnosis during pregnancy or at birth, we work together.
Concretely, how does M-21 work?
We have opened a free telephone line nationally and in the French-speaking world - we receive calls from Switzerland, the islands, Canada - from Monday to Friday from 9 am to 5 pm, for mothers and fathers who are facing this diagnosis.
The team is made up, among others, of parents of children with Down syndrome, and also a psychologist.
We have all been trained in listening by a specialized coach.
“I am content to listen and inform, I remain in a position of service”
How are the phone calls going and what are the parents' expectations?
I adapt to every woman - out of forty calls since September, there have been five men.
At the beginning of the call, I ask what is the need: to have information on trisomy 21, or just to empty your bag?
I'm not giving advice, that's not the point.
I content myself with listening and informing, I remain in a position of service.
The question most parents ask themselves is, "
What will my life be like?"
".
I therefore testify to what can happen - even if there are many unknowns - in negative, and in positive.
“It is often more difficult for dads to confront this diagnosis”
More often than not, what do you say to parents dealing with the shock of this diagnosis?
First things first: you are not alone.
This is the first feeling felt after this diagnosis.
Yet lots of people have lived it and still live it.
I recommend that parents inquire so that the choice made can be made in conscience.
It is often more difficult for dads to confront this diagnosis.
Many wish to end the pregnancy, or may experience severe depression after birth.
Many women confide that they do not want to keep the baby because they are afraid of ruining their relationship.
I tell them: “
You were two to conceive the child.
Be two to inquire.
Call the right people.
»
“Geneticists have thanked me, confiding in me that they don't know how to announce a trisomy 21!
»
When we waited for Isaac with my husband, here is what we ended up saying to each other: “
For nine months, we were ready for a trip, we had the passport to go to a specific country.
But Isaac changed the destination of the trip.
We were scared, but we learned the new language of this country.
It's dizzying, scary, but it's still a trip, with wonderful moments and terrible moments
.
During a congress in Rennes where I went recently, geneticists thanked me for the association, confiding in me that they did not know how to announce a trisomy 21!
How to explain it? is there still a medical ignorance of trisomy 21?
First of all, remember that trisomy 21 is a chromosomal abnormality and therefore a handicap, not a disease.
When I was told about the suspicion of trisomy 21 in my fifth month of pregnancy, I had two papers: one to stop the pregnancy, the other not to file a complaint against the hospital.
Me, what I wanted to know was what trisomy 21 is.
Read alsoCensorship of a clip on Down's syndrome: "A serious attack on the freedom of expression of people with Down's syndrome"
I remain surprised when faced with certain doctors who are astonished by Isaac's mottled skin: there is total ignorance and disinterest, because we remain in a logic where we almost systematically propose termination of pregnancy.
Fortunately, some doctors are great.
There are still many misconceptions today: some think that people with Down syndrome will have a very low life expectancy, that they will not be able to walk, go to school, work...
The discovery of trisomy 21 by the geneticist Jérôme Lejeune remains very recent: it dates from the 1950s. Previously, people with Down's syndrome were kept away from cities, in centers, were not stimulated.
Professor Lejeune discovered, with scientists, that with the right support, people can live a long life, get married, manage their money, etc.
Just last week, a woman confided to me: “
I am five months pregnant, my doctor told me that my child would never speak, would never go to nursery or school
”.
With current scientific advances, it is heresy to say such things.
Our son Isaac is in nursery.
Watching other children, he crawled at nine months and walked at 17 months!
We would like, in 2023, to organize a symposium with the medical profession responsible for announcing trisomy to pay attention to the words used.
We still regularly speak of so-called several “
degrees
” of trisomy.
How is this wrong?
There are several forms of trisomy 21, including trisomy mosaic, very mild, but rare;
and free and homogeneous trisomy 21, which constitutes 95% of cases and affects all the muscles of the body.
Our son has one.
When a child has this trisomy, there is absolutely no degree of illness: he will develop with the love and stimulation he will receive, scientific studies show.
It therefore does not depend on the financial means that one has, but on the unconditional love of one's parents - and the support of good professionals (orthopedists, physiotherapists, for example).
When Isaac was born, the doctor gave us this advice: love him and stimulate him!