Mr Leonard Onah and his wife Magdalene have been married for over 30 years. The union has been blessed with two daughters. Due to the prominence the society he lives in placed on male child, Leonard’s family deemed it necessary to have a male child at all costs. He needed a male child for continuity of his family lineage.
Having had two daughters, his quest for at least a male child made him engage in extra-marital affairs which also produced female children.
Fortunately, when his wife was delivered of a baby boy, Chibuike in 2004, his world seemed complete. He felt fulfilled and overwhelmed with joy. He will do anything to celebrate his son.
“My husband was the happiest person on earth. He would invite friends continuously to celebrate with him,” she said.
Five months after, the ‘fatherly love’ began to dwindle. His son’s body was gradually showing signs of immobility.
Troubled by the unsavoury situation, she rushed to the Ikeja General Hospital where her son was diagnosed of Hydrocephalus.
Determined to fine solution to her son’s health challenge, she went to Agege to consult one herbalist.
As years passed by, Mrs Onah was still managing her son’s health condition.
“One night my son started convulsing and I had to rush him to the same Ikeja General Hospital where I was informed that there was no bed space for him. I was worried.
“Early in the morning the following day, I took him to a private hospital where his convulsion was calmed. Then the doctor referred me back to the General Hospital where they later conducted the Hydrocephalus surgery on him to drain the fluid that has accumulated in his head. That was when he was five years old,” Mrs Onah said.
Chibuike could barely walk; neither could he use his hands well.
“His father would throw all manner of insults on me. He will scold me not to refer to Chibuike as his child,” she said.
Continuing, Mrs Onah said: “Ever since he noticed changes in his son, my husband became nonchalant about his son’s health condition.”
The petty trader who sells fruits and slippers at Ipaja/Ayobo got information about Festus Fajemilo Foundation, a non-governmental organisation (NGO) whose main priority is advocacy for the rights of children with Spina Bifida and Hydrocephalus challenges.
She explained that the organisation has been taking care of the school fees of her would-be 14-year-old son.
With the organisation’s advice to always engage the services of physiotherapists to assist her son in gaining control of his muscles, she expressed worries over how to devote time as she needs to visit the clinic at least three times a week, as well as managing her business which sustains the family.
Likewise , she is worried that of the challenges of sponsoring her first daughter in the university as she is set to sit for the Joint Admissions and Matriculation Board (JAMB) examination this year while the second would sit for the West African Senior School Certificate Examination (WASSCE) also this year.
Though the challenges and rejection Mrs Onah suffered weighed her down, she was somewhat lucky.
But Muyibat Saheed, also a petty trader, was not that lucky as her son’s condition was more severe than that of Mrs Onah’s son. Instead of the birth of her child to bring joy to the family, it was the beginning of pains and anguish for the entire family.
Saheed gave birth to her fourth child Qudus in August 2015. She was referred to the Lagos State University Teaching Hospital (LASUTH) after what appeared as hernia was noticed at the lower region of her son’s back.
“I saw it as a mere boil that will heal in a few days’ time. So, I applied sheer butter and spirit on it. But I noticed that it was actually getting bigger with a sack around it,” she said.
When she eventually visited LASUTH, Qudus was diagnosed of Spina Bifida.
The sum of N250, 000 was required for the surgery. Their world literally crashed. Being a hawker and her husband not having a consistent job; such amount of money is so hard to come by. They tried all they could to ensure the surgery was carried out. She became relieved that their son’s ailment was over for good.
Few months later, her son’s head started increasing in size. She rushed back to the hospital where she was told it was Hydrocephalus and 180,000 would solve her son’s health condition.
As they struggled to raise the prescribed amount, Qudus’s head was increasing more in size. Eventually, the surgery was carried out.
Mrs Saheed never thought of taking her son for any further surgeries as she was trying to manage her four-year-old son’s inability to walk and inability to control his urinary and bowel tracts.
Little did she know that they would need N150, 000 for the third surgical operation to correct his penis that was seemingly entering inside.
“During these periods, I could only think of one thing- suicide. I felt like jumping into the lagoon. All forms of suicides were just flashing in my mind. The thought of his (Qudus) condition and the cost of sustaining him gave me no hope to live. I felt God hated me so much so that He had punished me severely,” she said.
Spina Bifida and Hydrocephalus; a life-threatening defects
Spina Bifida and hydrocephalus are common types of Neural Tube Defect (NTD) affecting children. It is a common congenital malformation that affects the spine and the brain.
Experts have estimated that about 300, 000 births are affected every year globally. For children who survived, there is an increased rate of life-time disabilities.
Birth defects are the major causes of death in the first years of life. There are various kinds of birth defects which is associated with paralysis for those who survived.
According to the World Health Organisation (WHO), one out of 33 infants, which is about 3.2 million birth-related disabilities occur every year. It also noted that the prevalence of birth defects is responsible for an estimated 270,000 deaths yearly.
In Nigeria, researches have shown that Spina Bifida is the most common NTD which results in Hydrocephalus.
In a recent research conducted by the Department of Obstetrics and Gynaecology, Usman Danfodio University Teaching Hospital, Sokoto to ascertain the prevalence of Neural Tube Defect in North West Nigeria, Spina Bifida had the highest ratio of 72.7 per cent, Anencephaly at 22.7 per cent, Encephalocele at 4.6 per cent, while Hydrocephalus has 36.4 per cent and is the most common defect suffered.
Experts reveal that Spina Bifida occurs within the first four weeks of pregnancy. If the neural tube which is supposed to close up within that early stage of conception does not close up, it results in an opening of the spine at the middle or lower region of the baby’s back. This implies that the nerves (spinal cord) will not form well. It takes a surgery to close up the opening.
A Neurosurgeon at the Lagos University Teaching Hospital (LUTH), Omotayo Ojo said it is a life-threatening defect which would incapacitate a child who will live with urinary and bowel incontinence. Children with Spina Bifida are prone to diseases and often develop wounds within their anus.
“If the Spina Bifida is not repaired on time and gets infected; it leads to meningitis, which in turn, results in hydrocephalus.”
Continuing, Ojo said: “Spina Bifida appears in different forms; Spina Bifida Occulta (SBO) is a mild form of the defect which is only noticeable through an X-ray. It does not really cause any form of deformity. However, dimple or tuft hair could be seen around the lower region of the spinal cord.
“Meningocele is a visible type of Spina Bifida where the spinal fluid protrudes through an opening at the baby’s back. This type, in some cases, affects the bladder and the bowels.
“The most severe and commonest type of the defect is the Myelomeningocele. The baby’s spine is open in one or several places with a protruded sack of fluid at the middle or lower region of the baby’s back. The sack contains part of the baby’s spinal cord and nerves which are already damaged. This type has a high risk of infection.
Mrs Olufumilayo Adeniran, a Physiotherapist and Manager at Hands on Paediatrics Physiotherapy Services (HOPPS), noted that this NTD can affect the development of the brain. If the brain’s cortex, especially the frontal part does not develop well, the child would be faced with cognitive problems. She said the abnormality in the brain development may cause the child to suffer hydrocephalus and also can affect the language processing and physical coordination. It also leads to learning difficulties and depression.
On the other hand, Hydrocephalus also known as “water on the brain” is also a congenital defect as a result of infection from Spina Bifida and can be acquired. It is an abnormal accumulation of Cerebrospinal Fluid (CSF) on the brain. It affects the head size of the child and if not treated on time, it damages other organs in the brain. It is predominant in children and can also affect adults.
Ojo said early treatment is necessary in the management of hydrocephalus.
“It affects the brain function. It affects the intellectual capability of that child if it’s not treated. Once hydrocephalus sets in, it is an emergency; it cannot wait because every day, fluid is being produced in the brain. If put into perspective, the quantity of fluid being produced every day is like 300 millilitres which is a size of coca cola bottle.
“So, any day you wait, another 300 millilitres is added. Anybody who realises the head of the baby is slightly abnormal should get to the hospital immediately, and if hydrocephalus is confirmed, it should be done as quickly as possible,” Ojo warned.
According to Mrs Adeniran, bleeding in the brain during or shortly after delivery, especially in babies born prematurely, could result in Hydrocephalus. When Hydrocephalus sets in, the child begins to reject foods, bulging fontanel (soft spot of the skull) swollen veins, vomiting, seizures, split sutures- a gap is felt between the skull bones, increase of the head, the eyes are fixed downwards, fussiness and excessive sleepiness.
Save a child
The most identified cause of this NTD is Folic Acid deficiency. Medical experts have advised that a good intake of folic acid which is a B vitamin is critically important for all women of reproductive age and for expectant mothers.
Mr Ojo said most pregnancies occur unawares and before a woman knows she is pregnant, she is probably three to four weeks gone. By then, he said, the abnormality is already formed.
“No amount of folic acid intake at this stage can reverse the damage done not even surgery,” he said.
The unpleasant situation motivated Festus Fajemilo Foundation (FFF) to promote awareness of folic acid in Lagos State. It is a non-governmental organisation that advocates quality life and equal rights and access to available and affordable health services for children living with Spina Bifida and Hydrocephalus in Nigeria. It also promotes primary prevention of NTD.
Its founder, Afolabi Fajemilo faulted government’s inability to support NGOs to achieve robust folic acid awareness, adding that a strategic enforcement on the compliance of folic acid fortification on grains, flour and other staple foods would reduce congenital malformation.
“Government at all levels; the National Agency for Food Drug Administration and Control (NAFDAC) and other health agencies should painstakingly monitor these factories. Most of them do not even have labels on their products let alone using a fortified flour to produce these staple foods. Just like we achieved the compliance of iodised salt, it can also be replicated in the consumption of folic acid.
“Few years back I visited the Ministry of Health. Someone in the Family Health Matters Department asked me “what is the future expectancy with a child with Spina Bifida?” I was shocked. I never expected that kind of question. There is no education material on Spina Bifida and hydrocephalus in our ministries, let alone government making budgetary allocations for it.
“This explains the excessive big heads children with Hydrocephalus have here in Nigeria whereas a child with the same medical issue outside the country can never have such big head,” he said.
A health worker who identified herself as Sarah also attributed the increase of Neural Tube Defect to government’s failure to address the situation.
“There are so many foods either smuggled or legally imported that are not fortified with folic acid. Every year the country loses its economic manpower to defects that ordinarily a good intake of folic acid can avert,” she said.
Delay is dangerous
While it is appropriate that spina Bifida surgery be done within 48 hours of life to prevent infections that could aggravate the child’s conditions, many affected mothers had their baby’s surgery not less than three months.
Fajemilo argued that one major challenge parents do face in hospitals is ‘no bed space’ issue . He said with such delays and fixing appointments escalate the child’s condition. Another, he noted, is no knowledge of the affected child’s condition. He said many affected families would see it as an evil attack from enemies and start seeking solutions in churches, mosques, herbalists and others. In the process, infection may occur.
He called on governments to make health services more accessible to all, as well as reducing the cost of surgeries which has become difficult for parents of the affected children.
He added that the awareness of folic acid should not be restricted to antenatal education.
