Urge shift to lifelong support for patients’ post-surgery

Spina bifida mortality rates in Nigeria have declined significantly, falling to 6.0 per cent between 2020 and 2023 from a peak of 33.3 per cent in the 1990s.

However, medical experts warned that gaps in follow-up care, late diagnosis and inadequate support systems would continue to threaten the long-term wellbeing of survivors.

They, therefore, called for a shift from a healthcare approach that focuses primarily on survival and surgery to one that ensures lifelong medical care, rehabilitation, psychosocial support and social inclusion for people living with Spina Bifida and Hydrocephalus.

The issues were discussed at a national webinar organised by the Festus Fajemilo Foundation, in collaboration with the Spina Bifida and Hydrocephalus Association in Nigeria (SBHAN).”

Head of Neurosurgery at the Obafemi Awolowo University Teaching Hospital (OAUTH), Prof. Edward Komolafe, while speaking during the webinar, said although advances in treatment had improved survival, the healthcare system still struggled to provide the support children need after surgery.

According to him, findings from two Nigeria-wide systematic reviews showed measurable progress in the management of the conditions, which covered 63 studies involving 3,390 patients with Spina Bifida and 87 studies involving 3,380 patients with Hydrocephalus between 1962 and 2023.

Komolafe noted that these gains had changed the focus of neurosurgical care, with attention increasingly shifting from the choice of shunt used to treat Hydrocephalus to whether a child could remain free of a shunt.

He, however, cautioned that survival was only the beginning, stressing that poor follow-up, late presentation and the absence of clearly defined care pathways continued to undermine outcomes.

He said late diagnosis could increase the risk of irreversible neurological damage, lifelong disability and preventable death.

According to him, identifying a condition without an organised pathway to treatment amounted to only half a victory, making it necessary to strengthen the links between diagnosis, treatment and continued care.

The neurosurgeon also highlighted challenges surrounding the prevention of Spina Bifida, explaining that the neural tube closes three to four weeks after conception, often before a woman realises she is pregnant or attends her first antenatal appointment.

Also, Director of Medical Social Services at the Lagos University Teaching Hospital (LUTH), Titi Tade, said care for people living with Spina Bifida and Hydrocephalus must address their overall wellbeing rather than focus solely on clinical needs.

Tade said comprehensive support should encompass physical health, psychosocial wellbeing, daily living, education, employment, relationships and finances.

She stressed that growing older should mean progressing towards greater independence rather than losing access to essential support.

Meanwhile, to address these challenges over the next 20 years, both experts outlined four priorities: hospitals should establish clear transition policies and referral pathways; government should strengthen access to affordable, continuous healthcare and rehabilitation; civil society should support families, peer networks and community inclusion; and people living with the conditions should participate in designing and evaluating the services intended for them.