Testimony: "I discovered trisomy 21 of my son on the day of his birth"
I had a pregnancy without any particular problem. Even though I was obviously more tired because of the presence of my eldest son Antonin who was only 26 months old at the birth of his little brother. There was just a little warning during the 3rd trimester ultrasound because the examination revealed that the cavities of the baby's heart were slightly unbalanced. We therefore consulted a cardio-pediatrician who confirmed that there was nothing abnormal but that a check would be made at birth.
Nathanael was born by cesarean section June 22, 2016 at 15:45, his dad stayed by my side during the whole intervention. As soon as Nathanael was approached from me for a hug and a kiss I knew there was something. He was more chubby than his big brother and had his ears folded. I believe that Alexander and I immediately asked questions, even though we did not formulate them clearly. We were already in love with the boils of our son!
"I found that our baby had the physical characteristics of people with trisomy"
We were separated a few long minutes time to do the care and I recover in the recovery room. Then Alexander came back with Nathanael in his arms and I was able to give him the first feed. During this time I could not help but question my companion and express my concern, I found that our baby had the physical characteristics of people carrying trisomy. Alexandre confirmed that he had the same doubts but that the maternity staff had not mentioned anything. They were also great and let us enjoy the birth and our first moments with Nathanael.
The next day, after a night of interrogations and research on the internet each from our side, and after having long admired Nathanaël, we looked forward to the visit of the pediatrician. The midwives and nurses who were on duty that night also sought to know if I had any doubts and this, in all discretion. For example, I was asked if I thought Nathanael looked like his big brother, a question to which I answered in the negative.
The pediatrician finally came in the late morning and began to test Nathanael like any other baby. But the atmosphere was heavy. She then asked us if we had any particular questions or concerns and we told her about our doubts. She was very pedagogue and confirmed to us that she and all the staff also had a doubt and that a blood test was needed to confirm or refute these suspicions. Nathanael has almond eyes characteristic of people with Down syndrome, but you should know that his father and I also have almond eyes ... This moment was very complicated to live but as long as the results of the blood test were not not returned, there was hope.
"Deep within us I think we knew he had trisomy 21 but the confirmation was very difficult"
The results fell on Saturday late in the morning. The pediatrician came back specially to make the announcement in person. Deep down I think we knew he had trisomy 21 but the confirmation was very difficult. I burst into tears and dad was also very affected. It was a real tsunami of emotions. We were both happy to be parents again and at the same time worried and sad.
As we had doubts from the beginning, we had just announced the birth to our relatives without saying anything, without sending photos and expressly asking them not to come to the maternity pretext a great fatigue. The hardest thing was to announce them. It was my spouse who took care of it, I did not have the strength. He called everyone and had to rehearse the events.
After the announcement of the pediatrician, we learned that we could meet a psychologist. During the conversation, between hormones, fatigue and the whirlwind of emotions, I did not understand that she was telling us that we could place our son for adoption. I did not understand until my husband said there was no way our son would not come home with us. This is an option we have never considered.
"We do not want doctors, there were no detectable signs during pregnancy"
The whole maternity team and the geneticist pediatrician were really great with us. They took care of us, we were very lucky. They took the time to answer our many questions, very many even from my spouse!
We had to check his heart, planned for the pregnancy and before knowing that he was a carrier of trisomy 21, and we were told that a priori Nathaniel had no big heart problems. The pediatrician insisted that you should take advantage of this newborn baby like any other baby and that it was necessary to put in place an early treatment so that it has every chance to evolve.
We do not want doctors. There was no sign during pregnancy, the tri-test, which consists of a blood test coupled to the morphological ultrasound with measurement of the nuchal translucency, announced us 1 risk on 7961. It is only about statistical data and the amniocentesis is proposed only from '1 risk out of 250! We were far away. In addition, during ultrasound all seemed normal except for the small heart problem but can happen in any child. Today, I can not say what decision we would have made had we been informed of Nathanael's Down Syndrome during pregnancy. It is an extremely difficult decision to make and a tough choice. And then today we relativis, there are much more serious pathologies that can not be detected before birth.
Concerning the reactions of our entourage, they have been varied. Antonin and Léane, the daughter of a first marriage of my companion, did not make a difference. But we just wanted to explain to them that their little brother was different, that he would evolve at his own pace. Today, they are very complicit. For my mom I know it was a shock, but just like us she quickly fell in love with Nathanael. In the rest of the family, everyone was quite understanding even though I feel some form of reserve in some. On the side of friends, some were very present and listening while others went away.
"Nathanael is a real ray of sunshine"
Today Nathanaël is doing very well, he is a little boy of one year who evolves at his own pace. He is mischievous, naughty, sulky and very curious. Everyone around him falls under his spell! After his birth, we were quickly directed to Trisomy 21 Seine-Maritime where we were very well received. Nathanaël had the chance to quickly obtain a place at the SESSAD in Rouen where he has sessions of psychomotricity and speech therapy that help him to apprehend his body but also to strengthen his mouth and the whole oral sphere (tongue, cheeks, etc.) to encourage his speech.
He also has a session of physio in liberal to tone, work his motor skills, awaken his senses and show him the steps to turn, roll, sit, get on all fours and walk. On Saturdays, he also has a session with the kiné of awakening in swimming pool, Nathanaël adores the water and that allows him to apprehend his body diagram otherwise, these are very pleasant moments. Apart from all this, he has regular checks to see if he develops any of the pathologies often associated with Trisomy 21. Everything is fine on this side, he has no heart disease or digestive abnormality. Your thyroid, liver, hearing and eyesight are regularly monitored. For now, everything is fine too.
He is also followed by the geneticist pediatrician and a pneumo-pediatrician following several bronchiolitis this winter. He is a child very surrounded and very followed who evolves at his own pace. He begins to sit quietly and we are proud of all his progress: he knows how to clap his hands to "bravo", he knows how to say mom and dad and knows very well to make himself understood. He loves to play and laugh with his brother. It's pure happiness and a real ray of sunshine.
"I told my partner that Nathanael had something extra, a chromosome of love because we loved each other very much"
Obviously we have concerns for the future. I'm afraid he's not integrated into society, he's being laughed at and it's affecting him. I can not stand the idea that we can attack him on his difference and hurt him.
The idea of creating the association arrived very quickly. We called it "A chromosome of love and more". This name was born from a sentence I said to my spouse at the maternity ward, I told him to play down that Nathanael had something extra, a chromosome of love because we loved each other very much ...
We created this association to try to change mentalities and looks, to allow Trisomy 21 to be exposed so that it enters the media landscape and that finally it is more than a difference like any other, then we wanted to extend it to all handicaps because adults or children with disabilities are poorly perceived, there is a taboo ... we hide them.
Then we want to help parents who have not had the chance to have professionals listening, share our experience and answer their questions in a neutral way. But also help them find solutions, offer respite time, guide them in their efforts.
I invite people who have questions to contact us via our page or our site. I also want to tell them that yes, it can be scary, but that contrary to a lot of misconceptions, people with Down syndrome live normally, they play sports, they dance, laugh, are in love, have trouble, work, take public transport. They deserve our full consideration because, like everyone else, they have feelings, they have abilities, lots of things to bring. And I think I would like to meet Nathanael and his friends to people who do not know the Trisomie 21. These are meetings that enrich so much.
Nathanael has brought a different meaning to our lives, a new organization but also so much happiness and pride. I want him to be defined for what he is: a mischievous and joyful little boy.
Thanks to Rachel and Alexandre, Nathanaël's parents.
You can follow the adventures of Nathanael on facebook page "A chromosome of love and more" and support the association on website.
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