Nodding syndrome patients at the care center pose with donations from well-wishers. Photos by Eden Mic
Eden Mic
Kitgum: When Rev. Fr. Anthony Nyeko saw a rise in the deaths of children suffering from nodding syndrome after the shutting down of their care centers, he decided to open one.
In 2012, American neurologist, Suzan Gadza opened Hope for Humans, a nodding syndrome care center in Odek Sub County, Omoro District, one of the areas affected by the mysterious ailment.
In 2016, Gadza built a similar care center in Tumanguu in Kitgum district at a cost of shs150m. However, both centers were closed in 2017 due to financial constraints. The closure of these care centers led to an increase in the mortality of patients due to negligence, malnutrition, drowning and death by fires.
The increasingly dreadful conditions of the patients led to the conception of Archbishop John Baptist Odama Care Centre Kitgum, (JBOCCK) in 2021, under the stewardship of Rev Fr. Anthony Nyeko.
The care center, located at St Bakhita in Pongdwongo Parish, Pager Division, Kitgum Municipality started caring for seven children suffering from nodding syndrome in October 2022.
“I share the money I get from my friends abroad to buy food and medicine for them,” said Fr. Nyeko, adding, “Other well-wishers buy food and medicine because we can’t leave them to die like that.”
Besides improving the quality of life of patients, Fr. Nyeko reasoned that the care center would protect patients from sexual abuse.
Since the ailment started debilitating children in northern Uganda in 2007, at least 85 girls suffering from the syndrome have cumulatively given birth to 148 children in Labongo Akwang sub-county alone, according to Joe Otto, the coordinator of nodding syndrome in the sub-county, also a Village Health Team (VHT) member.
At the center, patients are offered food, medication, and speech therapy. They are also assessed by a psychiatric nurse to assess their progress before discharge.
Attempts to get a comment from Michael Okech, a psychiatric clinical nurse at Kitgum General Hospital, who is in charge of assessing the patients failed at the time of filing this story.
A 2021 quantitative study published in the Tropical medicine and Infectious Disease Journal indicates that adherence to anti-seizure medication such as sodium valproate, phenytoin and phenocarbarbitone, reduces seizures among the patients by 70% and eliminates seizures in 25% of the cases.
Otto said a care center would be the best place for the patients, as many are neglected at home, and all who were impregnated have been abandoned since they cannot identify their abusers.
“I wish the center could take care of many more patients,” Otoo said.
Fr. Nyeko acknowledged Otto’s concerns, saying they intended to start by admitting 20 patients to the care center, but were cautious because the center has no reliable source of income.
“It is very costly to take care of patients in terms of feeding and medication. If they are many, it means we also have to employ many caretakers,” Fr. Nyeko said, adding “The few have recovered greatly.”
Registering progress
The AJBOCCK opened with seven patients.
However, Godman Oloya, the program manager of the care center, revealed to GNNA that last year, one of the patients was discharged after she registered “remarkable improvement”.
However, four months after she was taken back to live with her parents, she relapsed and died.
“The level of care given at home didn’t match what she got at the care center,” Oloya said.
He said the care center is ready to discharge another patient because she has improved in five major areas of functionality such as alertness, mobility, and toilet habits.
“The time she was brought here, she couldn’t even walk, she couldn’t even talk, and she couldn’t even eat. But at the moment she has improved in all these dimensions in life. She can even recognize her parents,” Oloya said.
The care center, however, plans to do an impermanent discharge, where the recovered patient is taken home for only two weeks and taken back to the center to assess if she has adjusted to home care.
The transitional discharge involves preparing the parents psychologically and giving them tips on how to take care of the recovered better.
When the patient is taken back to the care center after, and examines the challenges the caretakers experienced at home. If there is improvement the patient will be discharged again to stay home for up to a month, with weekly visits by the staff of the care center, before they are finally permanently discharged.
“We believe maybe after six months at home, she can join school,” Oloya said.
Oloya explained that they have noticed that patients can recover within 13 months.
This, he said, is possible with robust treatment, care, supportive nutrition, and psychosocial support. They can improve from a critical to stable condition and go back home.
Bite Oloya on duration of recovery
The care center officials intend to admit more patients as others are discharged.
Plans to open farmland
When the care center opened, they decided to grow their food to provide nutritional support to the patients cheaply.
However, the crops didn’t yield well because the church land that was being used was exhausted, according to Fr. Nyeko.
Now, Fr. Nyeko said this year, 2024, he will hire at least 5 acres in Minakulu, since the land there is fertile and plant beans, maize, and other vegetables to supplement their food.
“If I get funds, my interest is to buy for them land where we can farm or where they can stay. My interest is also in opening another center in Omoro,” Fr. Nyeko said.
Now, the reverend is doing extensive lobbying in Kampala and writing to get funds for sustaining the care center and also opening a vocational skills center.
“We had planned that those who recover well would be trained in vocational skills when they are stable so that when we send them home, they are self-reliant.”
The 2022-2027 strategic plan of the care center includes enhancing health care and medication for nodding syndrome patients, offering language and physiotherapy, improving food security and nutrition, promoting food research, providing spiritual support, and vocational skills training for those who have recovered.
What is nodding syndrome?
A 2022 study on nodding syndrome by researchers at the University of Amsterdam defines nodding syndrome as “a debilitating neurological illness…that often presents with distinctive clinical features including repetitive head-nodding and other types of seizures and growth, and sexual and cognitive retardation.”
The disease was first reported in Tanzania in the 1960s, in South Sudan in the 1990s, and in Uganda in 2007. The disorder has no cure. Patients are only given anticonvulsants and balanced diets to improve their quality of life.
Estimates of nodding syndrome in Uganda from 2008 to 2022 vary according to different sources, from over 2,000 to 6,000.
