The pain of raising a child with spinal bifida
“I could not sacrifice my child. I believed God, who gave me the child, would take care of him. I did not want him to be thrown in the water,” Aryemo added.
(L-R) Lilly Ayoo, the community Development Officer Arum Sub County, Alice Aryemo and a family member during community dialogue and sensitization of community. (Photos by Johnisani Ocakacon)
NewVision Reporter
@NewVision
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Touching her chin while carrying a child on her lap, 20-year-old Alice Aryemo looks visibly emotional.
The mother of two narrates how she ran to Kalongo Catholic Mission to save the life of her eleven-month-old child after he was diagnosed with spina bifida and hydrocephalus.
This was after the family planned to throw the child into the river. The resident of Otengo village, AcolPii parish, Arum sub-county in Agago district, said she spent a week being taken care of by the parish priest.
Aryemo said, according to the elders, taking care of a child born with spina bifida is difficult since they may not survive on top of being bad luck.
The only way is to perform a ritual and then throw the child into the river for the gods.
Alice Aryemo a mother of Steward Ogenrwot narrating her story how she escaped to save the lifer of her child after she realize that family members want to sacrifice the child.
“I escaped with my child, Steward Ogenrwot, because there was already a plan to sacrifice him, which my father had agreed to. In Acholi culture, people believe children born with such conditions cannot survive and thus should be sacrificed,” she said.
The pain
“I could not sacrifice my child. I believed God, who gave me the child, would take care of him. I did not want him to be thrown in the water,” Aryemo added.
Thomas Okello, the father of Ogenrwot, said his family and the elders had agreed to throw the child in the river as they called it a sign of bad luck.
He said Ogenrwot was referred to Cure Hospital in Mbale six times, where he was operated on, but the condition did not improve.
“This forced me to accept that the child should be thrown into the river because I could no longer afford the treatment,” Okello explains.
However, Okello changed his mind because he believed that all children are a gift from God.
Other cases
Kevin Lakica, 23, who is a resident of Laliya ward, Bardege-Layibi division in Gulu city, said after giving birth to her first-born Precious, she did not know that her child had health complications until the head started swelling and was diagnosed with spina bifida and hydrocephalus.
“Precious’s head started swelling abnormally, and the neck became soft, which confused us. I took her to Gulu Hospital, where she was diagnosed with spina bifida and hydrocephalus,” Lakica said.
“I became nervous and I asked God to end her life so that she does not suffer,” she said. Not knowing what to do, Lakica was advised to seek support from Child Help International, an organisation that aims to improve the quality of the lives of persons with spina bifida and with hydrocephalus.
Charles Obita Oyoo, LC2 chairperson of Acol-Pii Parish, Arum Sub County in Agago District
The 15,000-euros-annual-project, funded by Child Health International, is implemented by AVSI Foundation for the treatment of such children in Gulu, Amuru, Nwoya, Omoro, Kitgum, Pader, Lamwo, Agago, Lira, Otuke, Alebtong, Dokolo, Apac, Amolatar, Oyam, Kole and Adjumani districts.
Spina Bifida
Bernard Tom Nakhosi, an occupational therapist working with the AVSI Foundation at Gulu Hospital, described spina bifida as a neural developmental birth defect caused by insufficient folic acid in the mother’s womb during pregnancy.
“There are, however, other factors, that contribute to the increased occurrence of spina bifida in northern Uganda. They include the environment, poor diet, and genetics.
The condition presents with bladder and bowel problems (incontinence), orthopedic malformations, such as club feet or problems of the knees or hips, and an inability to move the lower legs (paralysis), among other cognitive impairments,” he explains.
Nakhosi said these diseases are treatable and manageable, but there is no clear cure for them, and health workers can only identify the child, assess it, and refer it for surgery.
Thereafter, they do post-operative care, physical rehabilitation, and continence management.
Hydrocephalus
The occupational therapist said hydrocephalus is a head infection, where hydro means water and cephalus the brain; meaning excessive water in the brain which causes it to swell.
“For hydrocephalus, the child can get cured, but for spina bifida, a child needs to go for neural surgery and continue with medication to manage the disease,” Nakhosi added.
The cost and numbers
Nakhosi said it is costly to treat a child with spina bifida and hydrocephalus as the treatment of each child can cost up to sh12m.
A caregiver talking to Kevin Lakica from Gulu Regional Referral Hospital when she brought her child for physiotherapy treatment in Gulu City
“In northern Uganda, about 1,300 children are living with spina bifida and hydrocephalus, with about 1,000 having hydrocephalus and 300 born with spina bifida. Between 100- 150 children are diagnosed with these conditions every year,” he explained.
Nakhosi said in the Acholi sub-region, the Agago district is hardest hit, with 55 children diagnosed with the conditions and over 40 sacrificed to the gods annually by being thrown into the river.
Care
Joyce Laker Ocen, the program manager for Child Health International at AVSI Foundation, said children with such conditions are identified in the community and given physical rehabilitation at Gulu Hospital to enable them to grow up normally.
“Depending on the level of their disability, we ensure that we train their parents or caregivers and if the children are of age, we train them so that they can conduct their own clean intermittent catheterisation management,” she explained.
Laker said they also conduct home visits for family dialogue provide counseling to the parents and teach them how to care for children with such conditions while at home.
They also train them on wound management, as well as sensitising the community to help them understand this condition and ensure the children get holistic care.
“Some of the children are believed to bring bad luck to the family and are given bad names, which end up ostracising them,” she said.
Laker added that some children come from as far as South Sudan to get treatment and are usually referred to Cure Hospital in Mbale for surgery. She noted that the project has helped over 400 children in northern Uganda, and after their rehabilitation at home, they follow up with monitoring.
“Most of their parents cannot afford the cost of treatment, and yet some of them are still traumatised by the atrocities committed by the Lord’s Resistance Army during their 20-year insurgency,” Laker added.
Stigma
Aryemo was told that if she did not kill her child, she would not conceive again. This forced her to escape.
“My child is the first to have this condition in our family, and I was told to perform the ritual to cleanse the family of bad luck,” she said.
Lakica said moving into the community has become difficult as people call her names, a situation which sometimes forces her to hide her baby. “Being a young mother, I feel my future has been ruined after giving birth to a child with this condition. I feel stigmatised,” she revealed.
Message of hope
Proscovia Ajok, 28 a graduate of Gulu University, said she is living with spina bifida and has graduated and is now a social worker in Amuru district.
Kevin Lakica carry her child on her back suferring from spina bifida and hydrocephalus a condition that mostly affect children due to insufficient folic acid during the conception
Ajok said after she was diagnosed with spina bifida, her parents threw her in water, but she survived. They then struggled to treat her and see to it that she got well.
“Every child with spina bifida and hydrocephalus can live like any other if taken care of. They can study well because the disease is manageable. You will not know that I have spina bifida if I do not tell you” Ajok said.
Alice Oroma, a resident of Wol town council in Agago district, said she did not know that children with hydrocephalus could get cured until she took her grandchild for treatment at Cure Hospital in Mbale.
Oroma is a grandmother to Oscar Olanya, 17, and a student at Wol Seed Secondary School.
“Oscar’s mother, my daughter, did not have hope after giving birth to a child with hydrocephalus and there was already a plan to throw the child into the water, but I refused. I met people from AVSI Foundation, who took me to Cure Hospital for treatment and now the child has grown and is healthy,” she added. Oroma advised parents that they should stay away from the cultural belief of throwing away children born with spina bifida and hydrocephalus because it can be treated and managed.
Human rights issue
Florence Jojo, a Police officer in charge of the family and child protection unit at Lapono sub-county, said any child with a disability has a right to live normally.
“Throwing children with spina bifida and hydrocephalus in water is a murder case and the parties involved can be prosecuted,” she said.
Jojo suggested a rehabilitation centre for such children should be built nearer the community and strengthen sensitisation so that people know it is a murder case.
Clan leader condemns the practice
Faustino Owor, the chief of the Ker Kwaro Acoli LiraLapono clan in Agago district, said he has been allowing the rituals to be performed on children with spina bifida and hydrocephalus to prevent bad luck from the clan.
“We have been following what had been done in the past, but the world is changing fast and such conditions can now be treated,” he said.
Owor said in the past, the Acholi would rather throw the child into the river, instead of them suffering with a condition that has no cure. However, after sensitisation on spina bifida and hydrocephalus, he encouraged his subjects to desist from the ritual since it can be treated and managed by health experts.
“It used to happen in my community due to ignorance. We now need more sensitisation,” Owor added.
Mathew Lagen, the LC3 chairperson of the Lapono sub-county, said so many children are being killed silently in the district as a result of the condition and there is a need for more sensitisation.
“I call on cultural leaders to intervene so that this issue of throwing children into the water stops,” Lagen said.