Testimonial: “I almost lost my daughter at birth”

My first pregnancy went perfectly. My son Noah was born in 2009. Two years later, Xavier (his father) and I got married. Upon returning from our honeymoon in the Dominican Republic, I was pregnant again. During my second ultrasound, I was told of an “umbilical cord lump” without further explanation. I tried to understand on the Internet and of course, that did not reassure me… The gynecologist who followed me did not take my concern seriously. He was looking for info in front of me on Google! In short, I began to doubt his professionalism, so I went to a specialized hospital. “Don’t worry, it’s an isolated cyst, you just have to watch it”, was the doctor’s advice.

A week before the term, I no longer felt any movement. At the time where I landed at the maternity ward, the gynecologist joked “are you coming for a scheduled cesarean?” “. Everything that happened afterwards in the operating room is rather vague. I remember an oxygen mask, the doctor who shook my stomach while holding my head, the doubt in his eyes, the radio in the background talking about Mohammed Merah. Then a “give me the spoons”. No newborn crying. A nursery nurse who arrives with a bang and exclaims “she is beautiful, you will see her later!” “. During two or three days, I was in the cotton. Xavier was taking care of me. Naïwey was in another hospital in intensive care. I had little news. Suddenly, I woke up from my state, I wanted to see my daughter. I signed the waiver and booked an ambulance at my expense. When I arrived, I said at reception “I am Naïwey’s mother”. A nurse showed me a picture of her, her face swollen with a charlotte on her head. I couldn’t see her right away. The next day, I came back. I met Naïwey, she was in a dark, lonely room, hypothermic. His cord was hanging. She was weird, cold. It’s a stark image, but at that moment I barely dared to brush against his cold feet. I didn’t have the impression of being a mother, I couldn’t make the connection between this life and this belly which was now empty. It was explained to me that she suffered from omphalocele (a malformation of the abdominal wall, the baby is born with part of the viscera outside the belly). A white service coat leaned against the bedroom wall, staring at me with wet eyes. The next day, Xavier and I were received by three specialists. The box of tissues available. Naïwey had too much difficulty breathing. She had suffered from cerebral anoxia (the brain is deprived of oxygen which can lead to damage). The two sentences that I retained were “We are not going to persevere” and “Do not try to understand the cause”. Once in the car, I exploded into tears, screams, name names. I would have broken everything.

We then spent four weeks suspended between life and death. The first day after the diagnosis, I had a kind of denial. I couldn’t react. Then I clicked. I came back to see her in intensive care, I sang (I am a professional singer and dancer), I expressed my milk to the max. One morning, she was no longer in her room. Anguish. In fact, she had changed departments. Her navel was operated on. She has improved a little each day. Helpers took care of her, carried her, rocked her, decided to give her the pacifier without asking my opinion. Even though they gave her a lot of affection, it was like taking my daughter every time. Naïwey was able to return home after a month. She cried little. She made me feel like she didn’t need me. A real fighter. I was in automatic mode. I only saw the medical side, I didn’t really appreciate these moments. The comparison with the other children was difficult. His difficulties, his strange spasms. Then we got used to medical appointments and exams at Necker. All the follow-up was set up with a referent doctor who coordinates all the specialists: psychomotor therapist, pediatrician, ENT, physiotherapist, speech therapist … But we never knew (and we do not know yet today ) how the lesions evolve. Our couple has suffered a lot from all this stress and emotional shocks. At 3 years old, Naïwey had her first epileptic seizure. I thought she was dying before my eyes. Now, after ten crises, I manage much better … But we had to postpone his return to kindergarten. The anguish increased a notch: how was going to be his schooling? Today, Naïwey is 5 years old, she is progressing, is happy at school, even if she has some memory and language difficulties.

In 2016, I started training at the Maria Montessori Institute in Lyon to become a Montessori educator.These methods appealed to me: to start from what the child knows to take him elsewhere. I needed a project to regain my self-confidence. But also to intellectualize my approach with Naïwey, to find as many solutions as possible to help her progress, that she can flourish in everything she undertakes. The layout of our house is adapted to the cognitive and motor needs of our daughter. My children’s room has become a real classroom! Which took me, I admit, hours and hours of benevolent communication with the dad at the beginning. Thanks to the activities that I have set up, Naïwey has considerably gained in autonomy, self-confidence, responsibility, freedom, concentration. She was able to emit her first sounds despite the brain lesions which prevented her at the frontal and parietal level, to associate the first sounds with a graphic representation (rough letters). The stories to tell and the proposals of Dr Maria Montessori allow him to order his thought in a logical way. In the joy of learning. And she has not finished experiencing this sensory and magical material!

Thanks to my friend Nathalie, I set up an association that offers Montessori workshops. These exchanges with other children, other parents, allow me to put this whole story in a more global context and to put this psychopedagogy at the service of all. Naïwey follows the workshops. She is delighted to share her world with other children. Day after day, we are building an increasingly natural mother-daughter relationship. I learned to trust myself, to trust him. In short, to love her and take care of her without feeling guilty.