By Brenda Asiimwe, Cecilia Okoth, Hajarah Nalwadda, Joyce Nakato and William Ssebuuma
Four year old Reuben Ssenyonga was born with a congenital bone loss condition, which left him with an abnormal leg. His second chance at life was only possible if the leg was amputated.
Her initial plan was to have five children. The first two came effortlessly but the third pregnancy turned out to be a nightmare that never ended.
Like she had birthed her two elder children, 27 year old Jackie Nansamba was rushed to a traditional birth attendant when she got contractions. She was bleeding profusely and at the sight, the birth attendant chased her away saying she couldn’t handle her case.
Their next destination was Buikwe hospital where Reuben Ssenyonga was born in 2009 but with a deformity. Unlike normal children, his right leg was shorter than the left leg, and it also had a pseudo (abnormal) foot. Upon learning the condition of her baby boy, Nansamba was terrified and devastated.
"Despite having a problematic pregnancy, I did not expect to deliver a crippled child. I was sad and wondered why God did this to me." Antenatal checkups were alien to her, and even the Complications with the pregnancy did not prompt her to have one.
Mocked by village mates
But with the baby’s condition, Nansamba wondered how it would have been different had she had a scan and learnt that the baby would be born with a disability.
This was all new to her, she had no idea how to care for a disabled child. Her village mates even made matters worse by throwing comments like, “Omwana omulema naye mwana? Mumuwe amakereenda affe.” Loosely translated as, “is a lame child also a child? Just give him tablets to kill him.”
But with the help of her husband Ibin Senyonga, a local footballer, she came to terms with the situation. Not before long, little Senyonga developed complications with his crippled right leg. "The leg got an infection which caused it to rot. I took him to hospital and it was plastered. This worsened the situation because it was oozing water and it was at this point that I became extremely desperate.” Nansamba recalls.
"I feared for my child's life. With no money, I would walk long distances to all the places I would be referred to in hope of finding treatment to ease Senyonga’s life." She says.
Intervention by CORSU
Senyonga after surgery
A neighbour from the village recommended that Nansamba seeks help from Nkokonjeru providence home of sisters who are partners with Comprehensive Rehabilitation Services Uganda (CoRSU) in Entebbe.
CoRSU is a nonprofit organistion which specializes in orthopedic and plastic/reconstruction surgery and rehabilitation of patient. They focus on persons with disability and provide free surgery services to children under 18 years and operations on subsided fee for the adults.
Like God sent angels, the Sisters transported her and Senyonga to the hospital where they had him checked in 2010. He was diagnosed with a congenital bone loss condition." she narrates.
Nansamba was advised to have the child’s leg amputated but she was skeptical about this as she did not know how that would end up. “An orthopedic surgeon Dr. Antonia told me Senyonga’s leg could be elongated over time but the permanent solution would be amputating the pseudo foot and giving him an artificial limb,” she says.
She adds, “After consulting with my husband we came to terms that having the leg amputated would be the best thing for Reuben’s health. The doctors did their magic and life has not been the same since.”
Nansamba Narrates her Ordeal
Road to recovery
Despite having undergone the surgery successfully, Nansamba was still worried that her son would not be able to lead a normal life with the artificial leg.
Her plight was addressed by the orthopedic counselors who trained her on how to fit the limb and care for it. “With this leg Senyonga is just like any other normal child, he goes to school, loves to play football and running about with children his age. He can even fetch me water from the well when his brothers and sisters are not around.” She says with a beaming smile.
Moses Kaweesa, theOrthopedic technologist is interviewed by the New Vision team
Nansamba says her son is a very intelligent child, loves to study but unfortunately the school he attends does not have facilities that cater for the disabled. She says the teachers advised them to find him another school because he is too demanding for them.
She adds that though people in the village have now come to terms with the child’s state and now treat him like any other normal child, his classmates at school have not.
“We have to dress him in long trousers as he goes to school to cover his leg unlike the other children who have to wear shorts. The other children are always trying to undress him to see his artificial leg and the school authorities do not do anything about it.” Nansamba narrates.
She says that because of how she treats Senyonga with love and care like she gives the rest of her children, people around her, relatives and neighbours who were stigmatizing her and the child before have come to accept and love him.
Senyonga’s condition did not deter her from her plan of having five children like she had pre planned, she went ahead and had two more children all in perfect health.
She always travels to the hospital for check ups and consultations, also when her son experiences pain in his thigh. She removes the limb before bathing him, when he is going to sleep or when he plays for over a long period of time.
However the future of her child remains bleak because as much as she would love him to get a good education like the rest of her 4 children its not easy because he needs a special needs school which requires a lot of money that the family cannot afford.
Nansamba’s advice to parents with similar children
“Parents, accept your children's deformities and try to seek for medical help instead of mistreating them and hiding them. A lame child is also from God just like the normal ones. It is your responsibility as a mother to love him/her, attend to his/her every need because no one else will.
“Some mothers even prefer to leave such children under caretakers who have no experience and patience in taking care of such children. Leave them only with people you trust would treat them the same as you would. Such children require a lot of patience, understanding and affection.” She advises.
Early treatment saves- experts
Dr. Francis Nyiiro an orthopaedic surgeon with CoRSU says;
· Early intervention for Children with disabilities can be corrected.
· All expectant mothers should attend antenatal check ups to know the state of their unborn children.
· In case the scan shows that the baby is crippled, we prepare the parents mentally with counseling.
· It’s only after childbirth that treatment can be administered to rectify the disability.
· Children that get disabled after being born contract bacteria infections which if not treated early become fatal.
· There is need to sensitize the masses about treatment of disabilities.
· Parents should give children with disability a second chance at life.
· The notion that swallowing contraceptive pills leads to one having a lame child is a myth and has not been scientifically proven.
Fitting of artificial limbs
Moses Kawesa orthopedic technologist says patients with artificial limbs especially children require regular reviews as they increase in height. He explains that it’s important for a disabled patient to get a fitting artificial limb for purposes of comfort.
“We have to keep adjusting the artificial limbs especially for the young children to make them proportional with the normal leg,” he says.
According to Kaweesa, artificial limbs are made out of a material known as polypoplin. A stocking liner is then inserted into the artificial limb to protect patients who easily react to such materials.
Common disabilities among children include;
Club foot, bow legs, cleft lip and palates, severe contractures of limbs, knock knees, post injection paralysis, bone
infections, and post burn.
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A mother’s tale to save son’s abnormal foot