Sisters bring affordable hydrocephalus treatment to children in Rwanda

In early 2019, Francine Kanakuze took her two-year-old son to Butare University Teaching Hospital in Hue District, Southern Rwanda. There she was charged about $450 for proper treatment, which is about one month’s salary in Rwanda.

A young mother of three, she said her son’s illness began several years ago with an acute fever. At that time, she did not rush her son to the hospital. Because traditional healers in her native village in the Gisagara district encouraged her to resort to her herbs, leading her to believe that her son was possessed by evil spirits.

Little did Kanakuze know that her son was born with hydrocephalus. Hydrocephalus is a condition in which excess cerebrospinal fluid accumulates in the cavities or ventricles of the brain that contain cerebrospinal fluid.

“Previously, I was not able to take my son to the hospital for treatment due to my lack of knowledge about the disease,” she told Global Sisters Report.

While relying on herbal medicine, his health deteriorated and his son’s head grew abnormally large. Eventually, he was taken to hospital in a serious condition, where he developed nausea and vomiting. followed by fever.

The doctor advised Kanakuze to consult the Gikonko Health Center, run by the Sisters of Secular Institute St. Bonifatius in a remote rural village in the Gisagara district of southern Rwanda.

Since its establishment, the center has been visited annually by patients from all over Rwanda seeking specialized treatment for hydrocephalus.

Thanks to Uta Elisabeth Dür, a German physician and member of the Secular Institute of St. Boniface, the surgical placement of a shunt to drain brain fluid into the abdominal cavity gave the patient a new chance at life.

Founded in 1974, Gikonko is Rwanda’s only health center with facilities to treat hydrocephalus. Kigali University Teaching Hospital also treats medical conditions, but usually refers patients to Gikonko, where specialists are based. (Director of Gikonko Health Center Dulu said the hospital mainly provides preventive care.)

If Kanakuze had known about the treatment offered by the Sisters of St. Boniface, about $1 could have saved her son’s life.

“We know that most people cannot afford exorbitant medical bills, so we partner with manufacturers to donate wires and even distribute them for free,” Dulu said in an interview with GSR. Stated.

In addition to their expertise in hydrocephalus treatment, the medical team also provides rehabilitation and additional daily care for hydrocephalus patients, which primarily affects children in Rwanda.

Studies show an alarming trend of more than 6,000 new infant hydrocephalus cases per year in East Africa. The majority of cases are due to neonatal infections, so the disease should be preventable, researchers note.

However, in East Africa, where there is 1 neurosurgeon for every 10 million people, initial treatment of hydrocephalus remains difficult for most people.

Hydrocephalus is considered one of the most expensive diseases to treat in Rwanda, and the Sisters of St. bottom.

Currently, the medical facility receives 70 to 80 patients every week from all over the country. Despite high patient numbers with limited staff, the health center has successfully managed to stand out in treating certain cancers, cleft lip, cleft palate and hydrocephalus.

In people with hydrocephalus, the excess fluid can dilate the ventricles, adding pressure that can damage the brain. If left untreated, the condition can be fatal, according to medical experts.

Emmy Agave Nkusi, a senior consulting neurosurgeon at King Faisal Hospital in Kigali, said the exact cause of hydrocephalus is unknown, but a pregnant woman’s lifestyle can cause the disease. For example, if a pregnant woman does not get enough iron and proper nutrients during early pregnancy, the child can be affected. With routine prenatal screening, brain imaging and ultrasound may help detect hydrocephalus before birth, Nkusi said.

Claude Ganza will return to nursery school after six months of successful treatment for hydrocephalus. My 3-year-old son comes from a family that relies on subsistence farming in the southern Nyanza district.

Ganza is one of hundreds of children who have benefited from the free hydrocephalus treatment initiative of the Sisters of St. Boniface. His mother said the sisters’ efforts to raise awareness about the disease have led to early diagnosis and better treatment for middle-class families in remote rural areas.

Ganza was scheduled for surgery after being tested, after his mother received information about free treatment from the village health facility.

“My son has been suffering from this mysterious disease for the past five years,” she said. “I came here to get proper treatment because the pain is interfering with my daily life.”

Saint Bonifatius Sr. Jacqueline Mukanjiguier told GSR that the mission to bring health and welfare services closer to vulnerable communities has motivated the congregation to innovate new treatments for children with hydrocephalus.

“We serve as a religious organization,” she said. “We are doctors and midwives, and we embrace the core values ​​of our congregation that shape us and equip us to identify and respond to the needs of our communities. “

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