Summary
Maria Nicolle, 12, with spinal muscular atrophy (SMA), will spend her first Christmas at home after more than a decade in hospital, thanks to her mother’s legal victory for home care, bringing a new sense of wholeness to the family.
Christmas this year will be particularly memorable for the family of 12-year-old Maria Nicolle. For the first time, the young girl will spend the end of year holidays at home, in Contagem (MG), and not in a hospital bed. After more than a decade of admission to the Clinical Hospital of the Federal University of Triângulo Mineiro (HC-UFTM), she was discharged.
Diagnosed at the age of seven months with spinal muscular atrophy (SMA), a rare and degenerative genetic disease, Maria Nicolle needs special and continuous care to live with dignity, which makes her discharge from the hospital environment difficult. However, this year the mother, Shirlene Fernandes, won the right to home care in court. “I never thought this day would come,” the mother celebrated.
In an interview with EarthShirlene said that with her daughter home, she feels the family is finally complete and plans to put her old plans down on paper. “I want to show him the world,” he said. But until that moment, the road was long and strewn with pitfalls.
From discovery to diagnosis to treatment
Shirlene Fernandes says she discovered she was pregnant in April 2012, after she passed out. “I went to the doctor and he said to me: ‘Look, you’re already pregnant and you must be entering the second month.’
After confirming the pregnancy, Shirlene began following all the usual prenatal medical guidelines. However, at five months, his health began to show changes. The housewife initially developed pre-eclampsia, which caused her to stop working. “It was like that throughout the pregnancy: with high blood pressure. When I had it, my blood pressure was 23,” she reports.
Without improvement in her clinical condition, Maria Nicolle was born by cesarean section, eight months after the start of her pregnancy. According to the mother, the first signs of spinal muscular atrophy (SMA) appeared around four months of age.
“Maria Nicolle started to become hypotonic, she lost her body movements. When she started to get firmer, to get hard, I said to my husband: ‘This is not normal’. He replied: ‘It’s all in your head'”, she remembers.
Unconvinced, Shirlene consulted a pediatrician, who raised the possibility of lazy child syndrome and advised her to start physiotherapy. However, instead of improvement, the mother noticed a rapid deterioration in her daughter’s health.
Other symptoms also began to appear, such as frequent episodes of choking while eating, which led doctors to insert a tube to help. Despite this, the episode that led to definitive hospitalization was pneumonia associated with respiratory arrest.
“Since then, she has not left the hospital. She was admitted at seven months old and stayed in the neonatal intensive care unit for three years. From that point on, a series of tests began. There were more than ten tests for different syndromes, all with negative results, until a physiotherapist said: “Your daughter has all the characteristics of a patient I am at home, and she has a syndrome called SMA.” I said, ‘Let’s do the test, I need to know what my daughter has,'” he reported.
At the time, according to Shirlene, the disease was still little known and the health plan did not cover the diagnostic test. To cover the costs, the family stepped up and paid for the procedure privately.
The diagnosis was confirmed when Maria Nicolle was one year and four months old. Since then, she has undergone several surgeries to help her breathe and eat. “At the time it was a very rare syndrome, which almost no one knew about. I went to Uberlândia to attend conferences to understand what the disease was and learn how to deal with it, because it’s my daughter,” she says.
The mother says the emotional impact of this discovery was profound. “I was very angry with God, I’ll be honest. I asked, ‘Why me? Why did I want to be a mother? Why did I want to have a child?’. There were a lot of questions. Over time, I worked on it in my head, with the school and with the hospital staff, and I understood that it was not God’s fault, nor mine, nor her father’s fault,” she reflects.
“The doctors told me: ‘Mom, your daughter wants to live, go live with her’. And that’s what I did. My daughter, do you want to live? So let’s live,” says Shirlene.
The hospital has become a second home
Maria Nicolle began living in the pediatric department of the Hospital Clinics of the Federal University of Triângulo Mineiro (HC-UFTM) from the age of three, alongside four other children with the same diagnosis. She remained there for nine years, until she was transferred to another wing, where she remained until her medical release. In total, 12 years of daily coexistence with other patients and the healthcare team.
“I arrived here at 2 p.m. and didn’t leave until 11 p.m. Every day, for years. The worst part was leaving and leaving my son. For me, it was like I was abandoning him, leaving him behind. It was very difficult,” Shirlene recalls.
According to her, what comforted her was knowing that the next day, she would be at her daughter’s side again. “I would go in the morning, stay until lunchtime. Then I would come home, have lunch and come back. The girls (nurses) would prepare her bath, we would give her her bath and I would stay until she fell asleep. And so on,” she said.
Over time, the family got used to the routine, keeping the same schedules, but with longer breaks. “She also began to understand that I was leaving, but that I was coming back. I never let her see me leave, I waited for her to sleep. The next day, she woke up and didn’t see me, but the girls were talking to her. Then I arrived and I talked too,” he explains.
Mother and daughter overcame their fear to return home
“I tried to remove it once, but it didn’t work because I was a layman. I didn’t really know how to do it, no one told me anything. Today, there is a lot of information and I can help a lot of mothers. Many contact me at the hospital and come to talk to me. In my time, there wasn’t that, and that’s why she was hospitalized all this time,” says the housewife.
Shirlene explains that fear of legal action and financial insecurity to maintain the quality of care needed meant that the dream of discharge was postponed for several years. The encouragement to try again came after learning the story from the mother of one of Maria Nicolle’s colleagues, who had been approved for home care.
“I came home, talked to my husband and said, ‘Let’s see how it goes, let’s see how she’ll be at home’. At least we had someone to look up to, someone who paved the way. And everything went well. The girl came home and was super calm,” she reports.
According to Shirlene, after speaking to the child’s mother, she learned that the little girl was doing well and was even more active than when she was hospitalized. With the advice of her colleague, she looked for a lawyer and, despite her fear, decided to start the procedure. Within two months, the release was granted.
For the first Christmas at home, expectations are high. “I put up lights, decorated the Christmas tree. We put up the tree together, I put a waterfall in her room. I decorate it the same way she saw it on TV. Everyone is looking forward to Christmas and New Year, to see what her reaction will be,” he says.
“Now it’s all over. I want to show her the world, because she spent 12 years practically in a room,” Shirlene says.
What is SOUL?
According to Cláudio Araújo Faria, pediatrician at the Clinical Hospital of the Federal University of Triângulo Mineiro (HC-UFTM), SMA is a disease transmitted from parents to children and which interferes with the body’s ability to produce a protein essential for the survival of motor neurons, responsible for vital voluntary actions, such as breathing, swallowing and moving.
The disease varies from type 0 to type 4, Maria Nicolle’s is type 1. “Hers is one of the most serious. Then the child loses his movements over time. It can manifest earlier, it can manifest later, it will depend on the severity of each case,” he explains.
“(Despite the paralysis) her heart works well, her little brain also functions normally. So, she is aware of everything that is happening, but, over time, she can speak, she cannot express herself… Only with sounds. And then, she received treatments depending on the evolution of her condition”, he emphasizes.
Responsible for the child’s file since his entry into the health facility, Faria celebrates his exit. “We create this bond. A family bond of relationship with the mother, with the family, with all the professionals who take care of the child and with the child himself. I think it is a sensational life experience. For me, as a pediatrician, for all the people who have gone through this. We remember her as an example,” says the doctor.
“It’s a victory for us to have been able to send her home and live at home, because there are conditions for these patients to stay at home,” he says.
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