By: Mohammed Taoheed
When Salamatu Bello, an Ondo State resident had her first child, Adewale, she ignored everyone who told her his enlarged head was unusual and required medical attention. She believed it was a spiritual attack and sought help from an Ifa priest, a traditional diviner who consults Orunmila (The grand priest of the Yorubas). By the time he clocked two, and nothing changed, she decided to visit a hospital where the child was diagnosed with hydrocephalus.
Experts say hydrocephalus is a long-term neurological condition, normally identified in early childhood, where there is excessive fluid in the ventricular system within the brain which results in enlargement of the head. Enlarged head circumference may be accompanied by vomiting, failing vision, drowsiness, fatigue, deteriorating mental function and seizures.
A study conducted in 2019, by Micheal C. Dewan, MD, an Assistant Professor in the Department of Neurological Surgery, Division of Pediatric Neurosurgery at the Monroe Carell Jr. Children’s Hospital at Vanderbilt, in the United States of America, revealed that hydrocephalus has the highest prevalence in Africa and Latin America. Although surgical care has decreased morbidity rate in developed countries, in low-income countries like Nigeria, the low quality of public health care service makes it difficult. With reports revealing that untreated or poorly treated neonatal meningitis and nutritional deficiencies compound the morbidity rate.
On getting to know her son had hydrocephalus, Bello, began seeking medical intervention and was told she needed N445,000 for the surgery. With no way to raise such an amount, she turned to the internet for help and came across Givers Supportive Foundation (GSF) on Facebook.
GSF, a Kwara-based non-profit, carries out free surgery for children with hydrocephalus and other chronic childhood illnesses. Connecting with a network of neurosurgeons abroad, the non-profit arranges for children to get treated. First, a blood test is conducted on the patient and then a status diagnosis before surgery is carried out. Through GSF, Bello was able to get her son treated and free to live a normal life but many others aren’t as lucky.
“It costs about N300,000 to treat a single child with hydrocephalus in Nigeria,” says Dr. Mahmoud Abubakar Mukaram, the Registrar at the Department of Family Medicine, Federal Medical Centre in Kebbi State. For low-income families, that sum of money is a fortune and hard to come by. Also explains why GSF has only been able to arrange surgery for 10 children since it started offering support to young patients with the neurological disorder.
“Eight children have done the shunt procedure and two have undergone lumbar puncture.
“Shunt is a managing system to treat the ailment, it is a tube used to convey the fluid from the brain ventricle into other parts of the body where they’re absorbed,” Dr. Mahmoud said while explaining how the operation is carried out.
Lumbar puncture, which is another way to treat hydrocephalus is the piercing of the subarachnoid space in the lumbar region of the spinal cord to withdraw cerebrospinal fluid.
Despite having carried out successful surgeries for very few children, GSF says it faces several challenges when offering support to children with hydrocephalus. According to Oladapo Opeyemi, A researcher at GSF, many parents would resist treatment for their wards because they believe hydrocephalus is an evil spell that must be combatted spiritually.
“Parents believe that hydrocephalus is an evil spell or curse that medicine cannot interfere with. In our methodological research, we have found out that this belief has no scientific basis,” he said.
To fight the wrong perception, GSF says it organizes public outreaches to create awareness and sensitization especially in secondary schools. Having carried out a number of outreaches, they have been able to reach more patients in remote communities in Kwara.
Beyond carrying out sensitization, the team members of the organization double as counselors. They arrange a one-on-one discussion with the parents of young patients with hydrocephalus and offer support throughout the process of treatment. Then based on the findings, the patient is referred to an in-house neurosurgeon for the surgical operation.
A child is prepared for surgery by assuring them of safety during and after surgery.
“The procedure of treatment involves rigorous ways as a result of risky complications implanted in the defect status of the patient,” Oladapo said while explaining how patients are treated.
However, treatment isn’t always as easy and straightforward, sometimes parents of the children need to be convinced to let their ward undergo surgery. According to Oladapo they believe the notion that it’s a spiritual attack.
“Treatment doesn’t come easily when the condition has been complicated by the parents of the child. Their belief is that hydrocephalus is either an evil curse from an enemy or a “bad spirit attacking their family”. They argue during the counseling sessions and choose to find a cure through diabolical means. Our doctors complain that delay is dangerous for hydrocephalus, they say that lateness might mean losing patients,” Opeyemi explained to this reporter.
But the organization manages this by adopting advocacy programs that they also carry out on local radio stations. Here, they emphasize the need for parents who have a child with hydrocephalus to come for consultation and free surgery. Testifying an improvement, Hammed Adetunji, the Fundraising Coordinator, told this reporter that the programs are conducted in English/local language to erase communication barriers and aired mostly after work hours to reach a wider audience.
The organization also uses crowdfunding to raise money for the surgeries but relying on the goodwill of strangers isn’t sustainable and they have had to make do. Sometimes, they write private letters to selected individuals, civil society organizations and visit urban areas to meet health policy advocates to intervene in the little way they can in the project so that the outreach will be maintained.
“The surgery is money intensive, crowd-funding is not helping at all because we don’t usually get enough of what we need and if it comes it is usually not enough. In fact, we use our personal funds (salaries from businesses we do) to support the patients,” Opeyemi said.
‘’Online money is always late. Sometimes, we will drop a surgery if we don’t have the actual costs at hand. It is even stopping us from travelling to rural areas ourselves to pick the patients. You can’t easily persuade people to help. Sometimes they are afraid of being victims of fraud,” Hammed said.
“This story has been supported by Nigeria Health Watch through the Solutions Journalism Network, a nonprofit organization dedicated to rigorous and compelling reporting about responses to social problems, solutionsjournalism.org”