Children with Spina Bifida can live a long and happy life if diagnosed and access treatment in time, health experts have said.
Spina bifida (with exact cause unknown) is a congenital defect by which a baby is born with a ‘swelling’ or ‘wound’ on the back, leading to improper development of the spinal cord.
The health condition affects approximately between one and three out of 1,000 newborns globally, according to experts, adding that it is a life-long situation but persons born with it are capable of living long and healthy if properly managed.
Deputy Director, Nursing Services, Lagos University Teaching Hospital (LUTH), Idi-Araba, Ojei Sarat Onyebuka, explained this condition at a one-day media workshop organised by the Festus Fajemilo Foundation (FFF) in Lagos recently.
FFF, which was founded in 2006, is a pioneer NGO in Nigeria advocating the well-being of people with spina bifida and hydrocephalus.
According to Onyebuka, surgery is usually required on babies born with spina bifida, which is to remove the bulge from the back or threaten the wound if the bulge is already burst before delivery.
She noted that the condition is generally problematic, especially when considering the severe type, as the persons living with it may be unable to walk for life on their own or control their urine or faeces.
“Some may even suffer erectile dysfunction to the extent that they may not be able to procreate naturally on their own,” she added.
“And that is why children with spinal bifida need multi-care services from diverse health experts and social workers, and the earlier the better for a good result.
“They will need to use a catheter (a tube) and change it frequently, so likewise do bowel washouts so as not to mess up their body with urine or faeces.
Onyebuka declared that it’s far better to prevent the condition as caring for children with bifida is quite demanding, requiring both parents to join hands for these roles while society, on its part, accepts and gives support to children with the condition.
She noted that because of the challenges, some parents may hide their children at home or throw them away, especially because of stigma or when they find it difficult to cope, rather than enrol them in school for learning.
But upon the whole, she pointed out, spina bifida is not a death sentence, as children with the condition have the potential to study and learn skills and become responsible citizens, urging the government to take the condition with more seriousness.
In her own presentation, a social worker and FFF volunteer, Lara Fernandez, highlighted the importance of growing up youths who are yet to marry to take good care of their health and avoid premarital relationships.
According to her, it is better to avoid the risk of giving birth to children with deformities, as such health conditions usually come with multiple challenges.
“So, I will advise ladies who are yet to marry and those who have married to be taking folic acid daily to boost their immune system and lower the risk of having babies with deformity,” she stated.
Highlighting the impact of FFF in advocacy and care for persons affected by spina bifida and hydrocephalus over 18 years of establishment, the co-founder of the group, Mr Afolabi Fajemilo, said the foundation has built a community of families, providing support in the areas of surgeries, post-surgery rehabilitation, education, psychosocial, and vocational training, among others.
He noted that the foundation has handled no fewer than 240 children and youths directly, while some parents don’t bother to return with their children after their first visit.
He stated that the lack of dedicated continence care and management clinics for this type of health condition within Nigeria’s health system inspired the formation of the foundation, even as he emphasised the need for improved resources and support for individuals with spina bifida in the country.
Fajemilo explained that the foundation is in collaboration with the Spina Bifida Hydrocephalus Information Networking Equality (Shine) UK to be able to give support alongside eight public health facilities in the country, including the University College Hospital, Ibadan: LUTH, Idi-Araba, and so forth.
He mentioned that through the project, the foundation has trained 89 healthcare providers across five out of the six geopolitical zones of the country while partnering with eight public hospitals where individuals with spina bifida receive treatment, medications, and do regular check-ups as the condition requires lifelong management.
“So, we already have 240 cases out of 250 we projected to meet by 2025 for the free healthcare services, and we’re likely to surpass the target because of the improved public awareness and enlightenment that people with spina bifida are normal human beings and not spirits,” he stressed.
One of the beneficiaries of the foundation’s care, Gbemisola Awodipe, a 20-year-old student of Yaba College of Technology (YABATECH), told Tribune Online that she has gone over the stigma often associated with persons living with disabilities, as she is now making more friends than before.
She also noted that through the care from the foundation, she can now take proper care of herself, knowing when to go to the toilet and doing so by herself.
Gbemisola says she wants to become a professional photographer and believes she will achieve her dream.
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