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Neural tube defects, particularly Meningomyelocele, are highly prevalent in India, affecting around 3.7 out of every 1000 live births. Factors contributing to this include insufficient intake of vitamins, especially folic acid, during pregnancy, limited access to early antenatal ultrasound examinations, and strict laws on late termination of pregnancies. With approximately 26 million births in India each year, the number of babies born with neural tube defects could be as high as 100,000. Meningomyelocele, where the spinal cord protrudes from the vertebral canal, is the most common form observed.
These children experience varying degrees of bladder and bowel dysfunction, paralysis, and numbness in the lower body. Bladder dysfunction is particularly concerning as it can lead to urinary leakage and other complications. Dr Shirish Yande, Director Academic and consultant urologist, Ruby Hall Clinic explains the several challenges that exist in addressing this issue in Indian society:
- Primary care clinicians lack awareness and expertise in managing neural tube defects.
- Children from lower socioeconomic backgrounds, where prenatal nutrition is compromised, are more affected.
- Delayed access to specialists often results in partial or irreversible damage to bladder function.
- Specialty centers lack a dedicated and trained workforce.
To address these challenges, Dr Yande explains the necessary actions that need to be taken:
- Increase social awareness of this debilitating and potentially fatal condition.
- Allow termination of pregnancies in severe cases of neural tube defects.
- Implement standardized protocols for prompt evaluation and treatment after birth.
- Raise awareness among primary care physicians about early evaluation and intervention.
- Encourage multidisciplinary collaboration among urologists, neurosurgeons, paediatricians, neurophysicians, and orthopaedic surgeons to provide comprehensive care.
- Ensure rehabilitation is provided by physiotherapists, rehabilitation specialists, incontinence counsellors, and psychotherapists.
- Offer sexual rehabilitation with the support of andrologists and sexual counsellors during puberty.
- Ensure timely referral to tertiary care centers within three months of birth after neurosurgical treatment.
Successful management requires a collective effort from various subspecialties and increased awareness. Neural tube defects impose a significant burden on families and society in India, impacting short-term and long-term interventions.
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