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«What am I going to do now?», she wondered a few months after her baby was born with spina bífida.

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Her pregnancy had not been well accepted, the father of her son wanted her to make an abortion, the moment the doctor confronted her with the diagnosis of the foetus.  Her parents showed reservations to care for a baby with such disability.

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The father of the child vanished and no support was expected from him, after all she had made that decision against his will and thought she was responsible for the consequences.

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She didn’t regret her decision, because she transferred all the love she had to that child, but the burden was heavy, without a companion to share the endurance of a dependent child, and future adolescent, adult. She had the support of her parents , who turned very caring and loving with their grandson.

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In the beginning she was a bit naïve not being totally aware of what was coming. After the baby was born she realized and learnt what were the implications of spina bífida.

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Her baby had the worst type of that condition, a long word and difficult to pronounce, a myelomeningocele. This was the most severe form, known as open spina bífida. Usually associated with other complications,  poor ability to walk, problems with bladder and bowel control, which affected her child. Fortunatelly, as he grew up,  he seemed quite smart, always smiling and with no cognitive limitations.

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The relationship between mother and son grew in a very intimate and strong way, much stronger than if he had not that disorder.

Her doctor had told her about some of the risks her son would face in the future. With his mobility compromised he might risk a metabolic syndrome and obesity in adult life. Other complications might occur such as repetitive strain injuries and rotator cuff syndrome, osteoporosis . Individuals with spina bifida who are not physically active are more likely to have dyslipidemia and hypertension, be smokers, and be at risk for cardiovascular disease. High blood pressure was more prevalent in those with spina bifida who also had a history of diabetes, a history of procedures to treat neurogenic bladder, and renal dysfunction.

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So she had to be aware of the need for adequate physical activity to prevent these risks. As she was very concerned with his physical exercise, she motivated him to swiming and  canoing, which he seemed to enjoy, though in the beginning he got tired after a while.

Since his childhood her son moved around the house crawling and he could do it very fast. Outdoors, his mobitity was dependent on the wheelchair. As he grew up new adapted wheelchairs were replaced.

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Urban accessibilities are flawed, the everyday life of a person on a wheelchair is full of obstacles. The law states the rights of people with disabilities, but the reality doesn’t  comply and often neglects those rights. Later on, at school, he faced some limitations in accessing upper floors, because there was no lift or any wheelchair platform.

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During his childhood she devoted herself exclusively to her son and the bonds between the two were strong.

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In spite of the state subsidies to assist her son’s needs, she had extra expenses and was economically dependent on her parents. They lived in the same house and she got a great help from them. She had no income and could not buy or rent an apartment of her own or expect any independent living during her son’s first years.

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Eventually, she might find a school with the conditions to receive him and perhaps she might find a part time, not only to get some income, but to distract her from the obsessive concerns with her son. In fact, she had no special qualification or a university degree to get a decent occupation, most jobs were unqualified and poorly paid. And these jobs were also very precarious.

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Nontheless, as soon as her son was enrolled in a kindergarten, at 5 years old, she started to look for a part-time job and she experienced several short term jobs as supermarket cashier and  in three different spaces at a shopping center. Finally, with the help of her parents, she tried to start a small business on her own, making clothes, but she had a rent to pay for the small shop where she  made and sold the clothes, and the sales didn’t cover the investment. It didn’t succeed, with the serious economic crisis in the country and people cutting on everyday expenses.

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She had to close down and try some job with a flexible work schedule allowing to assist her son, whenever needed. With his condition he was submitted to some surgeries, very early, to minimize risk of infection, associated with the exposed nerves and to protect the spinal cord from more trauma.  The procedure placed the spinal cord and exposed tissue inside the baby’s body and covered them with muscle and skin.

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Her son was submitted to catheterization, with a small tube inserted into the bladder to help drain urine. And this would be a permanent condition. His disorder required  a multispecialty team of surgeons, physicians and therapists.  Treatment for complications — such as weak legs, bladder and bowel problems or hydrocephalus — typically begins soon after birth.

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In the first years her son was closely supervised, with routine bowel and bladder evaluations and management plans to help reduce the risk of organ damage and illness, evaluations including X-rays, kidney scans, ultrasounds, blood tests and bladder function studies.

She got also specialized in hospitals, health centres and the spina bífida condition. Her son had assistance from rehabilitation medicine, neurology, neurosurgery, urology, orthopedics, occupational therapy, dietitian. When he started school , special education teachers as well.

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In some moments of her life she felt grief, anger, frustration, fear and sadness. Doctors would encourage her, with  good reason to hope, because most people with spina bifida live active, productive and full lives — especially with encouragement and support from loved ones.

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At some point, she searched for the help of a child psychologist, to assist with adjustment and coping. Most children with spina bifida are resilient and adapt to their challenges with support from their parents, teachers and other caregivers.

She, herself, needed to find a support group of parents who faced the same problems with their children with spina bífida. She had to keep healthy, physically and psychologically, to support her child.

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She felt the need to reflect and and write her daily thoughts and she decided to create a blog, that she kept almost like a journal.

She made a retrospective of her life with her child and now that adolescence had arrived new challenges had to be overcome, for his son felt distracted in the classes, wouldn’t do his homework and teachers would tell her that he was going to fail. She couldn’t accept that a smart child could waste the opportunity to achieve in school.

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She had never had reasons to be concerned with before, he had a great capacity to learn just by listening, he had great math skills and his vocabulary was quite good for his age.  So, why this sudden change?

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It is a fact that the degree of difficulty raises every schoolyear, but school cannot be just a place to socialize with schoolfellows…  How come he got seven negative grades in the first term of the year?

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«How is it possible to get a negative in visual arts? You just had to deliver a simple free drawing. There’s no excuse for this» and she continued «I’m not going to last forever and you must make the effort to prepare yourself and choose what you want to do with your life. If you don’t get an education your future is compromised. I don’t want you to be institutionalized and living on charity. You must be autonomous and command your own life».

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In spite of watching him more engaged, when arriving home from work, the second term did not show much difference, with six negative grades.

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She had another hard talk with him: « If you fail this schoolyear, you’ll be working during summer holidays, and next year you’ll be repeating the same subjects and your schoolfellows will have passed and you will not be in the same class.»

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Sharing her concerns with work colleagues, one of them introduced her to a computer engineer who developed a portuguese version of the exoskeleton for paraplegic, and who was also a tutor of computer programming classes for kids. She managed to meet him with her son and he provided an  electronic kit and support to make a robot, in case he would pass in school.

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Considering the enthusiasm of her son, she was hopeful that he might make the effort!