Many mothers of children living with disability agonise to the point of tears over perceptions in their families and the society that they are cursed.
Some beliefs have forced men whose wives gets such children to divorce them and marry another woman, while others opt to hide such a child at home to avoid being seen.
The deformities frowned on include bent legs, hands, back and even holes in the mouth, scientifically known as cleft lips and cleft palates.
The condition has disturbed so many families and communities since the victims hardly develop audible speech when they grow up, unlike those with deformed limbs, who can speak.
The stigma this generates forced Lydia Auma, 25, to keep covering her three-month-old daughter all the time at her home in Guase village, Homa Bay county.
When visitors trickled in after she was blessed with Sinak Maline, Auma felt that they just wanted to see the cleft lip on the baby's mouth.
“My other children are okay but this girl had deformities on her mouth. I was so disturbed. People kept asking me what had happened to her,” she says.
CAUSE UNKNOWN
Dr Joseph Theuri from Cure Kenya International Hospital in Kijabe says the cause of the defect is not known.
He says culture and lack of medical information have led many communities in Africa to attribute the condition to a curse or a bad omen. Ignorant people who give birth at home end up staying with the children with the problem.
“These issues have given women horrible lives. Their husbands, peers and the society turn against them, asking how and why they were cursed,” Dr Theuri said.
The orthopaedic surgeon says the defect is classified into unilateral and bilateral. Unilateral means the cleft has affected one side, especially the lip, while bilateral means the cleft has affected the lip and the roof of the mouth.
“These are defects whose causes are not known. They are treated when children are about three to four months old, when the child’s tissues grow to be able to withstand anesthesia. They undergo surgery to correct them,” he said.
Dr Theuri says people who grow up with clefts, whether large or small, struggle to speak understandably. The face being central to appearance, they also feel uncomfortable since they do not look like others.
He added that those who speak with difficulties and are taken to school, always perform poorly since they are ridiculed by other pupils. Some dropouts and others opt to live at home hiding, and others are hidden by their parents.
“In this regard, such people face rejection and end up lacking marriage partners in future. They feel frustrated and useless,” Dr Theuri said.
The hospital executive director Abed Mulelu says these factors are why they started a programme to reach out to families in rural and remote areas with such children to help them correct the defect free of charge.
About 300 children out of 1,000 in the country are observed to have such problems in one year, and it’s only 200 who get treatment, leaving about 100 with the deformities on their mouth.
OUTDOOR CAMPAIGN
Mulelu says two children undergo surgery at the facility every week. He says they started an outdoor campaign in remote areas, where they make public announcements through chiefs, public health officials, calendar’s and posters that they will come to their village at a particular place to see children with clefts.
“Mostly we do campaigns for cleft lips, but we do not turn away those with disabilities,” he said.
The hospital has focused on Nyanza, Western, North Rift, Eastern, Northeastern and Coast, where many women give birth at home and don't take their children to clinics after birth.
“These are places where we find cases covered by customs, such as children were born like that because their mothers were cursed, were not meant to get married, were to bring shame to the family or community, and so many hurting stories,” Mulelu said.
“Being a hospital that is founded with Christian teachings, we pray for them, speak to them about curses and our doctors explains to them that their causes are not known.
“Once they agree to tell us their stories, those we see and refer to our hospital in Kijabe are treated, and after they are discharged, they go back to their villages with testimonies.”
This is how Auma's daughter Maline started to heal. Auma heard the hospital has a campaign in their village and went to find out if her daughter’s defect would be corrected.
She walked for almost 2km to the Guase trading centre, where the hospital officials were. “I had covered by baby well, and I couldn’t tell the people I met on the way where I was going since I was not sure if she would get any treatment,” she says.
However, after she was observed, she was told to make an arrangement to travel to the Cure Hospital in Kijabe in Kiambu county, so her daughter could be corrected through surgery.
“I was told she was of the age when doctors advise mothers they undergo surgery to correct the defect,” Auma said.
Speaking at the Cure Hospital bed, Auma says she arranged for the over 400km journey in a week. The big issue was to get bus fare. Her husband helped her look for it but was left taking care of the other children.
“When the doctors observed her, and told me not to worry, I was so happy. They asked me to come to Cure Hospital and she will be treated, and so I came,” she said.
“They told me she would have developed speech problems, but now she will not and she will be okay. I thank God because I was confused about her life and what had happened.”
OTHER NEWBORN DEFORMITIES
Dr Theuri says other children's deformities corrected at the facility include club foot, where a foot or feet are twisted, angular deformities, hip dislocations at birth, spine scoliosis, upper limb congenital deformities, and neural-muscular diseases, such as cerebral palsy and muscular dystrophy.
Mulelu says the hospital has a bed capacity of 32 beds but four are private. He adds that they are looking forward to expanding their wards due to the number of patients seeking correction following the campaign they have done.
The four private beds are set aside for adults and especially sportsmen who need urgent correction of limbs and observation.
“We aim to change the hope of the society, that which they have lost after getting a child with deformities. By so doing, we give the children hope to enjoy their future, in a way they don’t and didn’t know,” Mulelu said.
“On the other hand, we reduce the number of people who fall in the category of People Living With Disabilities, and in the process, reduce the number of people who do not pay taxes, since PLWDs are exempted from paying levies in so many services.”
Mulelu thanked their partners, including Safaricom Foundation and Smile Train, for their continued support to the facility, which has been in existence for 20 years.
Smile Train director Jane Ngige said her organisation provides training and funding to empower doctors and hospitals in over 80 countries to enable them to offer free cleft repair, especially to children.
“Children have no issue while growing up, but their mothers feel ashamed of them. They cannot go with them anywhere,” Ngige said.
She said at least 20 hospitals in Kenya offer cleft lip and palate surgeries and have a total of 30 orthopaedic surgeons.
She said her dream is to see the number of children with treatable deformities reduced.
