Born deafblind due to rubella infection, condition has not stopped Louise from enjoying life

She leans, turns and accelerates her bike, unperturbed by the immediate darkness and silent world surrounding her. Only when she pedals to a halt does one realise she is both deaf and blind. So spirited is she, that this would never stop her from engaging in an activity that gives her such deep pleasure. “I am number one,” she quips after the ride in the field at Kilimani Primary School. Meet Louise Ouko, 21, a vocational training student. The youth, despite her special needs, is already a decorated sports person.

In April this year, she led the deafblind team in scooping the top prize in the national special sports and games for the deafblind in Bungoma County. Louise participated in multiple disciplines, including 50 metres sack race, 100 metres guided sprint, four by 100 metres relay, short put, discus and goal ball.

And in 2008, she travelled to London with her mother to meet Princess Ann to showcase her triumphs and rally for recognition of deafblind persons.

It is Wednesday afternoon and Louise, who is in boarding school and gets to go home on weekends is excited because this week she gets to go home two days earlier because the following day is a public holiday, Eid Mubarak. She jests at her mother, who has not brought her her favourite meal, chicken, yet it is visiting day. “Where is the chicken?” she signs on her mother’s palm, Jane Ouko. Louise uses tactile sign language, a communication technique where a two-handed manual language involving touch is used by deafblind persons and those with multiple disabilities.

The feisty youngster is the last born in a family of five; her mother describes her as a gem and a miracle - a child who has taught her family that one can become a conqueror despite having dual disability.

“At birth she weighed only 1.5 kilogrammes. Compared to my previous four children, she was the most resilient though the lightest and had difficulties breastfeeding,” says Jane.

Unwavering support

“But I did not give up on my child. I knew she would live,” Jane says, adding that the doctor’s pronouncement that her girl was both deaf and blind also came with the news that she had heart complications due to a 0.7 centimetre hole in her little heart. According to experts, this would affect her growth and development if it was not rectified early enough.

This knowledge set off a battery of tests that also established the newborn also had clouding of the natural lens of the eyes, known as cataracts, which required surgery to save her sight. It was at the same time that Jane noticed that her daughter had hearing impairment.

“Whenever doors were banged by the wind or loud music played, Louise would not respond. We suspected she could not hear, and a hearing test confirmed this,” says Jane.

Jane remembers juggling periodic ear and heart clinic appointments at the Kenyatta National Hospital and Kikuyu Mission Hospital for eye check-up. Draining as it was, the Oukos did not give up.

We were to move from one hospital to another seeking treatment for her eyes. Unfortunately, the surgery was postponed severally, and when it was eventually done, Louise had lost most of her sight.

Jane acknowledges the unwavering support of her husband Jared Ouko, even as the sleepless nights looking after a sick child with multiple health conditions took a toll on the family.

The hole in the heart closed in what Jane believes was as a result of supplication in prayer for her sick child. Soon after, the little one began achieving milestones, albeit late. She started crawling, and would later walk at the age of five years. The toddler also managed to add weight to her small frame, reaffirming to the Oukos that she would live after all.

However, the caregivers she engaged did not want to attend to a child with disabilities, prompting Jane, a teacher, to carry her child to work.

“Louise accompanied me to school daily. I would leave her in the staff room as I taught and would attend to her after the lesson,” says Jane. Today, Louise is a star student and athlete at the vocational training unit at Kilimani Primary School, where she enrolled as one of the pioneer students one and a half decades ago, a unit that began with only three students.

Mary Maragia, who heads the deafblind special unit at Kilimani Primary School defines deafblindness as a distinct disability where hearing and seeing are impaired at varying degrees in individuals. For this reason, they need a unique set of language skills to communicate.

Health conditions

Apart from health conditions that run in families, other causes for deafblindness include birth trauma, illness and injury, with the affected persons having varying loss in both their hearing and vision.

Sense International Country Representative Edwin Osundwa estimates that there are about 17,000 deafblind individuals in Kenya. However, this is complimented by 10 specialised units for individuals with this dual disability.

According to Ms Maragia, who is trained in special education, persons with varying degrees of both deafness and blindness have other developmental needs and their educational wants should be significantly and uniquely adapted to their school environments.

Jane encourages parents with children who have special needs to enroll them in academic programmes that will see them develop into all-rounded individuals due to the specialised education approach and interaction with peers.

And to affirm her teacher’s words, Louise rides on a bike at the school field with the tutor running ahead of her to ensure there are no obstacles like football goalposts.

“They have amazing abilities.They just need to be given a chance,” says Jane who is also the treasurer for the Parents of Deafblind Individual.

According to the tutor, deafblindness challenges the child’s ability to access communication and language, but enrolling a child to an early intervention institution encourages him or her to lead a near-normal lifestyle as per their adaptive skills acquired.

Learning for the deafblind is built on the power of touch. To enhance communication in this group, the Kenya Institute of Curriculum Development has formed a curriculum for the deafblind. “The curriculum has four levels; pre-school, basic education, pre-vocational and vocational levels. The pioneer students, Louise included, are expected to sit a special national examination,” says Maragia.

Some of the vocational skills taught include communication, beading, kitting, basketry, cookery, exercise and gardening. They are also taught how to perform everyday living activities such as bathing, dressing and household chores.

“Louise can fix a cup of tea with ease; she can shower, dress, oil herself and also tidy up the house,” says her mother, adding that the entire family has learnt to include her in basic household chores.

Her siblings and parents are conversant in tactile sign language, which is essential for communication. Robert, Louise’s fourth born brother says he has learnt that his last born sister is different, and this cannot hamper their bond as siblings. “We are very close and despite being the last born, Louise supervises us all to ensure that basic chores in the house are done,” says Edwin, who just completed an accounting degree.

To ensure safety and comfort at home, the arrangement of furniture is rarely altered so that Louise can find her way independently.

“Whenever we make any changes, we let her know so that she does not lose her step, stumble and injure herself. It is part of inclusion,” says Jane. Sporting aside, Louise is also an avid weaver who makes mats and beaded necklaces and wrist bands that she fondly gifts friends and family. Her determination to utilise her hand dexterity and talent has seen her brush on a newly acquired skill, baking.

Her newly-acquired skill at school this term is baking, and she hopes to show off her pastry skills to her family this coming August holiday.

Back to when her journey with her daughter started: Jane says a rubella infection during her fourth month of pregnancy caused her daughter’s disability. Then she was ignorant, and never in her wildest imagination would she have thought that a simple rash would adversely affect her unborn child.

“My sister noticed a mild rash on my skin when I was four months pregnant and because it cleared by the next day, I did not seek any medical attention. I assumed it was a normal rash,” says Jane. Regrets aside, Jane says the birth of her last born child has brought with her life lessons, key of them being to stay robust in life’s journey.