Improving Continence Care for people with Spina Bifida in Nigeria: Lawal’s Story
16 December 2024
What is Spina Bifida?
Spina bifida is a condition that occurs when the spine and spinal cord do not form properly.[1] It is a congenital condition developed during pregnancy and is present at birth. Spina bifida literally means ‘split spine’ and occurs when the neural tube, the structure in the embryo that becomes the brain and spinal cord, does not develop correctly.[2]
Worldwide, neural tube defects are among the top five most serious congenital disorders, and of those, Spina Bifida is one of the most prevalent. In low- and middle-income countries, the risk of babies born with Spina Bifida is as high as one in every 100 pregnancies.[3] Patients with this condition mostly have problems related to neurogenic bladder (where your central nervous system, brain or spinal cord cause you to lose control of your bladder), orthopedic (musculoskeletal) complications, kidney involvement, and hydrocephalus (fluid on the brain).[4]
All children born with spina bifida will have a neuropathic (nerve damaged) bladder and bowel, causing lifelong physical problems that need medical care, which are a significant challenge to the affected patients and their families.[5]
Continence Care and Management for people with Spina Bifida is critical for thriving and achieving their full potential in life. However, children with spina bifida in Nigeria face significant barriers to receiving this care. Financial constraints, lack of access to continence products and necessary drugs, paucity of medical equipment and personnel, and insufficient information on managing incontinence means many miss out on this vital care.
Introducing the Health Partnership
The Health Partnership between Festus Fajemilo Foundation (FFF), a disability NGO which aims to improve the quality of life for persons with spina bifida and hydrocephalus in Nigeria, and Shine UK, a UK-registered charity providing specialist support for people living with spina bifida and/or hydrocephalus, in collaboration with the Lagos University Teaching Hospital in Lagos State Nigeria, have been working under the Global Health Workforce Programme (GHWP) to provide continence care to people with Spina Bifida in Nigeria.
The Health Partnership between Shine UK and the FFF began in 2015, when they initiated a pilot health project to assess continence service provision in Lagos State, Nigeria. Aiming to enhance understanding of the needs for improving continence care for people with spina bifida, the partnership piloted a project providing continence training for nurses and families. Sadly, the pandemic disrupted this project, leaving children without vital support and access to healthcare. Feedback from families and nurses outlined how economic hardships have compounded the situation. Disabled children in Nigeria are slipping through the net, heightening the need for the partnership to expand the reach and impact of this healthcare project.
With funding from Global Health Partnerships (formerly THET)’s GHWP, funded by the UK Department of Health and Social Care (DHSC), the Health Partnership have been able to do just that, scaling up the Continence Care Management intervention to 8 tertiary health facilities in 8 States across the country, namely: Lagos, Oyo, Osun, Sokoto, Abia, Federal Capital Territory, Rivers, and Edo.
Through close partnership, Festus Fajemilo Foundation and Shine UK aim to continue improving the health and well-being of children and young adults with spina bifida and reduce mortality rates of 300 Nigerian babies by increasing the skills, knowledge and confidence of healthcare professionals to provide specialist continence care to those who need it.
To date, their work has trained 89 nurses, established clinics in 9 hospitals, and supported over 200 individuals, but the need in Nigeria is still overwhelming. Many families lack access to essential continence aids, leading to avoidable complications like infections, kidney damage, and early mortality. There is still more to do.
Due to challenges around gaining external funding, every Health Partnership has been strongly encouraged to plan for the sustainability of their projects beyond the GHWP. Shine and FFF have embedded project sustainability for the longer-term in their approach: clinics in the public health facilities are owned and run by the hospitals themselves with nurses who have received specialist training and support; they will continue to facilitate a peer support network among trained nurses and outreach workers to promote on-going collaboration and knowledge sharing; and they are developing a network of lead nurses, who will advocate and champion the work, and oversee the quality of care and positive changes in health for Nigerian babies, children and young adults with spina bifida.
The Health Partnership have trained
89
nurses
established clinics in
9
hospitals
supporting over
200
individuals
Lawal's Story
Lawal is one of the patients reached by the Health Partnerships’ project under the Global Health Workforce Programme. Shine UK and FFF first met Lawal in October 2017 when he was just 12 years old. He was born with Spina Bifida and struggled with issues of incontinence relating to his condition.
When Lawal’s bladder pressure measurement was performed in 2017, it was >40cms H₂O, meaning his bladder capacity was half the expected volume for his age. His bladder pressure was dangerously high, posing a threat to his kidneys. More so, the absence of leakage during high pressure added to the concern. Shine UK and FFF provided Lawal with tools to manage his condition, teaching him how to empty his bladder hygienically (via Clean Intermittent Catheterisation (CIC)), doing this just once a day. Lawal was also advised to increase emptying his bladder and do a bowel flush out (BWO) up to 5 times a day to avoid constipation and promote faecal continence, and to administer Oxybutynin into the bladder via the catheter twice a day since Oxybutynin relaxes the bladder muscle and thereby reduces the pressure.
Seven years later, in July 2024, the Health Partnership reached out to Lawal again and he volunteered to undergo a bladder pressure measuring as part of the healthcare workers training under the GHWP. Now nearly 19 years old, Lawal presented as a confident, articulate young man who had done well at school and was studying at college. He told us he had maintained regular treatments of CIC and BWO as instructed and had instilled Oxybutynin twice daily until the supply ran out 2 or 3 months previously. He was invariably clean and dry – he did not use diapers at home or school. Diapers were only needed for times when toilet access was limited, for instance when traveling to the clinic.
The Bladder Pressure Monitor test initially proceeded without note, with only a modest rise in bladder pressure noted at 50% and 75% of bladder filling and no leakage until almost 100% filled. At that point, the bladder pressure was found to be over 30cms H₂O. This means Lawal’s bladder capacity was now a normal adult man’s – a huge increase from the half-expected volume seven years ago. The only way this feat could have been achieved is an absence of pressure, demonstrating that the treatment with Oxybutynin alongside regular CIC and BWO has been successful.
The rise in pressure towards the end of filling demonstrated that the lack of Oxybutynin allowed Lawal’s bladder muscle to be overactive again. If Lawal continued to have no access to Oxybutynin, his bladder would incur damage, and his kidneys would be at significant risk from back pressure. Lawal would also be highly likely to be incontinent of urine again.
Thankfully, the Health Partnership managed to secure a renewed supply of Oxybutynin through the GHWP, allowing patients like Lawal to resume treatment. The difference that the continence management programme has made to Lawal is life-changing. A happy, healthy young man, Lawal, plans to travel once he has finished his studies – something that would have been impossible to imagine in 2017. The expansion of this work through the Global Health Workforce Programme will allow this Health Partnership to reach more people like Lawal with the care they need to live healthy lives, making a significant difference for those living with Spina Bifida in Nigeria.
[Images (c) SHINE UK & the Festus Fajemilo Foundation, 2024]
References:
[1] https://cscuk.fcdo.gov.uk/development-theme/driving-positive-change-for-children-with-spina-bifida-and-related-disabilities-in-nigeria/
[2] Nnadi, Daniel Chukwunyere, and Swati Singh. “The prevalence of neural tube defects in North-West Nigeria.” Saudi Journal for Health Sciences 5.1 (2016): 6-10.
[3] Oumer, Mohammed, Ashenafi Tazebew, and Mezgebu Silamsaw. “Birth prevalence of neural tube defects and associated risk factors in Africa: a systematic review and meta-analysis.” BMC pediatrics 21 (2021): 1-13.
[4] https://www.fesfaj-foundation.org/what-we-do/projects/continence-management/
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