The Festus Fajemilo Foundation (FFF), a non-governmental organisation, has highlighted the urgent need for increased awareness and special care for children living with Spina Bifida and Hydrocephalus (SBH).
During a media sensitisation programme at Lagos Airport Hotel, themed “Saving Lives, Improving Futures (SLIF Project),” the Foundation addressed widespread misconceptions about these life-altering but under-recognised medical conditions.
The session focused on early signs, symptoms, and practical measures to reduce risks, while stressing the critical importance of early medical intervention.
Co-Founder Afolabi Fajemilo noted that the lack of dedicated continence care and management clinics within the Nigeria’s health facilities inspired the initiative, underscoring the need for improved resources and support for affected individuals born with spina bifida.
He said: “In 2016, Festus Fajemilo Foundation (FFF) collaborated with Spina Bifida Hydrocephalus Information Networking Equality (Shine) UK to support public health facilities in Nigeria towards offering a stand-alone continence care & management clinic for people with spina bifida who may experience double incontinence of bladder and bowel throughout their lifetime.
“In the course of implementing this project, we have trained 89 health facility staffs and community health workers in continence care and management across 5 of the 6 geopolitical zones of the country, we engage in regular supplies of free continence equipment & kits to all partner health facilities for improved access to quality continence care services.
Fajemilo said the aim of the SLIF project is “to enhance the skills, knowledge and capacity of health workers in the delivery of quality continence care and management to increase the life chances and futures of babies, children and young adults with spina bifida in Nigeria.
“One of our objectives is to improve the wellbeing of 250 children with spina bifidathrough the established hospital-based clinics and outreach activities. AT the moment, we have reached 240 children with spina bifida who are currently accessing the care and experiencing improved wellbeing/self esteem.
“We have successfully partnered with eight public hospitals across Nigeria, where individuals with spina bifida receive treatment, medications, and engage in regular check-ups as the condition requires a life long management.
The hospitals include Lagos University Teaching Hospital (LUTH), Obafemi Awolowo University Teaching Hospital Complex (OAUTHC), University College Hospital (UCH), University of Abuja Teaching Hospital (UATH), University of Benin Teaching Hospital (UBTH), Rivers State University Teaching Hospital (RSUTH), Usman Danfodio University Teaching Hospital (UDUTH) and Federal Medical Centre (FMC) Umuahia.” He mentioned.
FFF’s Volunteer and Social Worker, Lara Fernandez urged youths to abstain from pre-marital sex and unprotected sexual intercourse.
She also added that ladies who have been engaging in intimate relationship need touse folic acid tablets to boost their immunes and reduce the risk of having children with congenital birth defects.
Fernandez said: “I will love to advice young girls and ladies that the best way to save yourself from situations like these is to abstain from pre-marital sex, because that the surest way you can protect yourself from the risk of giving birth to children with deformities, and if you have started having sex and also for people in marriage, at least ensure you take folic acid daily to boost your immune system and lower the risk of having children with these conditions”.
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20-year-old Awodipe Gbemisola who is one of the beneficiaries of the program said it has been helpful stating that she has made significant progress through the care and treatment she receives.
“The process has been wonderful and helpful I would say, one of the challenges thatcome with this ailment is we bedwetting, but with the help of the care i receive, I know when to pee and how to help myself. I make more friends now unlike before and I associate with people better now with the help of the treatment.”
The foundation also called on the government to strengthen support towards primary prevention of common birth defects such as spina bifida and urged Nigerians to refrain from Stigmatizing, , discriminating, or excluding individuals with these conditions.