This 38-year-old mother from Lille is fighting for her 2-year-old daughter to regain some normalcy. Luana had both legs amputated in July 2019 from meningitis B since she has been struggling to learn to walk.
It all started in July 2019, when her siblings were at school at the time, 1-year-old Luana is in a feverish state and above all, unusual. “My daughter was rushed to the hospital shortly after becoming unwell, she started having the first spots of purpura around 7:00 pm. It was then that they declared her condition serious. They decided to do additional exams and she was transferred to another hospital ”, says Mélanie, 38 years old.
A few hours later, the little girl's condition worsened sharply, the spots covered almost her entire body. Pediatricians say Luana has meningitis B and shows signs of purpura fulminans also called fulminant meningitis, an infectious syndrome, sometimes fatal, which causes blood to clot and limbs necrosis, which leads to amputation. . An unpredictable infection that can be overwhelming, especially in infants and children in 10% of cases.
“My daughter got out of it with difficulty, she was in a coma and on a ventilator in intensive care. They took away the vital prognosis after only eight days ", indicates the mother. Soon the organs of the Luana ceased to function. "The first three days were really the most critical, especially the first night because her organs failed and she was quickly put on dialysis. Then the liver and pancreas took turns failing. It was very difficult for her. bring it up to standard ”, says Mélanie.
A lack of prevention that could have changed everything
A serious illness of which Mélanie was unaware of the existence and especially the irreversible consequences until now, and for good reason, no health professional has done any prevention. “If I had known that there was meningitis with little spots or that the fact that she was like a rag doll could foreshadow that, or that doctors and new doctors were a little more informed, maybe that she would have been less impacted on that. There might never have been an amputation ", deplores the Lille mother.
Indeed, this mother of three children had always taken all the compulsory vaccines. However, she was not aware of the existence of a vaccine against meningitis B because it is an expensive and optional vaccine. “I took the meningococcal C vaccine because Luana was born after January 1, 2018 and has been mandatory in the vaccination record ever since. So I had her first injection two or three weeks at most before she got sick. But no pediatrician when I gave birth, nor my doctor, told me about the meningitis B vaccine. I had two children before I was 8 and 9, we never talked about it. Because yes, at the time, I would necessarily have paid to do it because it is not reimbursed. Now I try to fight for it without having to pay for it, because I believe that a child's life cannot be bought. "
For this mother, it is essential to listen to her child. “If you see your child in an unusual condition, fever or not, don't hesitate to call for help. If parents are not taken seriously, they must insist on being heard. "
"Our goal is for her to walk on her own and there it will be a victory"
Today, the daily life of the whole family revolves around Luana, who joined a rehabilitation center from January. Unfortunately, the Covid-19 health crisis delayed the long-awaited sessions. “We had her first prostheses in March because in the meantime she had to have a second operation because she had a growth of her bones on her stumps. Then we put the prostheses in place but she has to get used to them, she is a young child. We then had the definitive prostheses in June, with a better system and more pleasant for her. And today, so physically she is impacted with a source of disability. And her daily life is punctuated with mine so that she can finally walk on her own. She is making progress, she now stands up on her own. She takes a few steps, holding our hands or alone, a few meters away. Our goal is for her to walk on her own and that will be a victory. "
For her two children, this situation was all the more complicated, especially when the girl had an amputation on July 22, 2019. “At the start, we discussed it together, not to mention the vital prognosis involved. I ended up telling them that she was breathing through a tube, with IVs. After ten days, they came to see her, my son did not want to touch her for fear of catching "the germ" ", she recounts.
Subsequently, the two children were followed by a doctor and a child psychiatrist, so that they could understand what was going on, namely, the amputation of both Luana's legs. Today, the family has been rebuilt, Mélanie is looking after her daughter full time. Within a year, she will be entering the same nursery school as her brothers and sisters to start her brand new life.