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Trisomy 21: “My son is not a baby like the others”

3 min


Gabriel is a 16-month-old boy who fills his parents with happiness. He has trisomy 21. Méghane, his mother, returns to the shock of his birth, and tells us how this “little ray of sunshine” embellishes their lives day by day.

”At 22, I was far from imagining everything that was going to happen”

I had my first pregnancy quite well, except for non-stop vomiting until the sixth month of pregnancy.

I did all the standard tests (blood tests, ultrasounds) and I even had ultrasounds every month.

I was 22 years old, and my partner was 26 years old, and I was far from imagining everything that would happen … And yet during my pregnancy, there was only one thing that scared me, I dreaded deep inside me for no apparent reason, given my “normal” exam results.

The pediatrician announces: “Your baby is surely Down syndrome. We will do a karyotype. “

 

On July 15, 2016, at 11:58 pm, I gave birth to my son Gabriel in a clinic near my home. My partner and I were so happy, our long awaited wonder was finally here, in our arms.

The next morning, everything changed.

The maternity pediatrician told me blankly, without taking any gloves, or even having the correction of waiting for my spouse to arrive: “Your baby is surely Down syndrome. We will make him a karyotype to be sure. With that, he leaves the nursery because he has to go see his own daughter. He leaves me in the plane, alone, annihilated by the news, crying all the tears of my body.

In my head, I wondered: how am I going to announce it to my spouse? He was on his way to see us.

Why us ? Why my son? I’m young, I’m only 22 years old, it’s not possible, I’m in a nightmare, I’m going to wake up from one minute to the next, I’m exhausted, I think I’m will not succeed!

How is it possible that the health professionals did not detect anything … I wanted to the whole Earth, I was completely lost.

”I was just looking forward to going out with my baby from this clinic and finally going home.”

 

My best friend arrives at the maternity, all happy for me. This is the first to know: seeing me in tears, she worries and wonders what’s going on. I could not bring myself to wait for the arrival of the father: I told him the terrible news, and she took me in his arms, without believing it either.

Dad comes right after, she leaves us both. Obviously, it is absolutely everything not to crack in front of me. He supports me and tells me that everything will be fine, he reassures me. He goes outside to clear his mind for a few minutes and cries in his turn.

I was just looking forward to going out with my baby from this clinic and finally going home so that we could take back our new life with three, and try to put aside this bad stage of life and enjoy the good times with our little angel.

”So small and already so many trials to face. Gabriel is a warrior!”

Three weeks later, the verdict falls, Gabriel is diagnosed with trisomy 21. We suspected it, but the shock is present anyway. I had inquired on the internet about the steps that had to be taken, because the doctors let us go into the wild without telling us anything …

Multiple ultrasounds of control: cardiac, renal, fontanelles …

Multiple blood tests also, steps with the MDPH (Departmental House of Disabled People) and Social Security.

Again the sky falls on the head: Gabriel suffers from a cardiac malformation (this affects about 40% of people with Down’s Syndrome), he has a wide CIV (intra-ventricular communication), as well as a small CIA (in-ear communication). At 3 and a half months, he had to undergo an open-heart operation in Necker to reseal the “holes”, and he can finally gain weight and breathe normally without having the impression of running a non-stop marathon. Fortunately, the operation was a success.

So small and already so many trials to face! My son is a warrior. His operation allowed us to relativize, we were so afraid for him, afraid to lose him. For the surgeons it is a routine operation, but for us young parents it was a different story.

”Gabriel offers us a beautiful lesson in life. We will fight for him, he deserves it.”

 

Today, Gabriel is 16 months old, he is a very happy and happy baby, he fills us with happiness. Life is not always easy of course, between medical appointments every week (physiotherapist, psychomotor therapist, speech therapist, pediatrician, etc.) and the fact that he always falls sick (bronchitis, bronchiolitis, pneumopathies) because of its very low level of immune defenses.

 

But he does it well. We realize that in life, health is what matters most with the family. We must know how to appreciate what we have and the simple pleasures of life. My son offers us a beautiful lesson in life. It will always be necessary to fight for everything with him, so that it develops at best, and one will always do it, because it deserves it, like any other child. ”

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Meghane, mother of Gabriel


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