A major new healthcare partnership in the Punjab will help to create better lives for babies born with incomplete development of the spine and lower bowel – through early diagnosis and timely surgical treatment.
The Ludhiana hub of the NIHR Global Health Research Unit in Surgery is working with the Punjab Ministry of Health to explore how best to create referral pathways from the community into surgical units in the region.
Backed by experts at the University of Birmingham, the partnership will support Punjabi families – aiming to reduce both the frequency of appointments and travelling time for infants to receive treatment.
These spinal and lower bowel problems account for one in six babies with major birth disabilities. Most of these children receive no treatment or delayed treatment, resulting in multiple life-long conditions. Consequently, growing up they cannot work, socialise or live independently causing large financial, community and family burdens.Professor Dion Morton - University of Birmingham
Professor Dion Morton, from the University of Birmingham, commented: “These spinal and lower bowel problems account for one in six babies with major birth disabilities. Most of these children receive no treatment or delayed treatment, resulting in multiple life-long conditions. Consequently, growing up they cannot work, socialise or live independently causing large financial, community and family burdens.
“We aim to prevent complications by early diagnosis and timely treatment - strengthening multi-disciplinary rehabilitation programmes to support families and children. We want to provide a cost effective, community focused programme that allows early diagnosis, treatment and follow up that improves lives - widely applicable across Low- and Middle-income Countries and adaptable to benefit other developmental conditions such as club foot or cleft palate.”
Dr Dhruva Ghosh, from Christian Medical College & Hospital, in Ludhiana, commented: “Working together will help families across Punjab to lead better lives, but we believe the impact of what we want to do here will be felt far beyond the region, as we transfer experience gained in India across our network of more than 100 countries.
“We believe that multiple long-term conditions can be prevented through timely treatment and accessible rehabilitation programmes. Moreover, focused training for community health workers and for allied health workers can enable cost effective, rapid, sustainable scale up of this programme.”
The research team believe that supporting community programmes on in Punjab will provide a foundation that will ultimately benefit patients across the global south. They are particularly interested in reducing the incidence of Spina-bifida and ARMs.
Spina-bifida and ARMs are important birth disabilities - both associated with faecal and/or urinary incontinence if treatment is delayed. In ARMs, without timely treatment, early death or long-term faecal/urinary incontinence is inevitable. Kidney failure is another preventable, but frequent consequence of delayed treatment, particularly for spina-bifida, along with other disabling conditions, limb deformities, congenital cardiac malformations and gynaecological and sexual health disorders.
Spina-bifida affects one-in-500 births and ARMs one-in-4,000 births in India and western Africa, together comprising about one-in-six of disabling congenital conditions. Some 94% of spina bifida and ARMs occur in low and middle income countries (LMICs), accounting for over 50% of disability-adjusted life years (DALY) – a measure of quality-of-life - lost from congenital disabilities