Myelomeningocele is a complex birth defect where the spinal cord and its protective coverings do not fully close. This form of spina bifida is characterized by an exposed sac on the baby’s back containing part of the spinal cord, nerves, and spinal fluid. Planning care for a newborn with myelomeningocele involves understanding immediate medical needs, ongoing daily management, and long-term support. This guide provides parents and caregivers with a clear overview of the comprehensive care required.
Immediate Care After Birth
Upon birth, immediate medical attention focuses on protecting the exposed spinal cord and preventing infection. Healthcare providers cover the sac with a sterile dressing to maintain moisture and shield it. The baby is often positioned on their stomach or side to avoid pressure on the lesion. Antibiotics may be administered to reduce infection risk, such as meningitis.
Surgical closure of the spinal defect typically occurs within 24 to 72 hours after birth. This procedure returns the spinal cord and nerves to the spinal canal and closes the opening with skin, preventing further damage and reducing infection risk. While surgery cannot reverse existing nerve damage, it is important for preserving remaining spinal cord function. Following repair, monitoring for hydrocephalus (a buildup of fluid in the brain) is a priority. This condition is common, with many newborns requiring a ventriculoperitoneal (VP) shunt to drain excess fluid and relieve brain pressure.
Comprehensive Daily and Long-Term Care
Neurological Management
Ongoing neurological management is important for children with myelomeningocele, especially concerning hydrocephalus. Healthcare teams monitor head circumference and assess for signs of increased intracranial pressure (headaches, vomiting, or changes in alertness). If a shunt is in place, consistent monitoring for proper function is important, as malfunctions or infections can occur and require prompt intervention. Children may also experience tethered cord syndrome, where the spinal cord becomes stretched or attached, potentially leading to new or worsening neurological symptoms that may require surgical release.
Bowel and Bladder Management
Managing bowel and bladder function is important due to nerve damage. Most children experience neurogenic bladder, meaning the bladder does not function normally, leading to difficulties with urine storage or emptying. Clean intermittent catheterization (CIC) is a common technique: a small tube is periodically inserted to empty the bladder, protecting the kidneys and preventing urinary tract infections. Similarly, neurogenic bowel can cause constipation and fecal incontinence, necessitating structured bowel programs including dietary modifications, laxatives, or scheduled toileting.
Mobility and Physical Development
The degree of lower limb weakness or paralysis varies depending on the spinal defect’s location. Children with higher defects often experience more significant motor impairment. Physical and occupational therapy are important for promoting mobility and independence. Therapists guide exercises to maintain range of motion and strength, recommending assistive devices like orthotics, braces, or wheelchairs as needed. These interventions support a child’s ability to move and participate in daily activities.
Skin Integrity
Sensory deficits below the spinal lesion mean children may not feel pressure or pain in certain areas, increasing their risk for skin breakdown and pressure injuries. Daily skin checks are important to identify red areas, blisters, or sores, particularly on bony prominences. Proper positioning in chairs, beds, and other equipment, along with specialized cushions or mattresses, helps distribute pressure evenly. Maintaining good skin hygiene and promptly addressing incontinence also contribute to preserving skin integrity.
Nutrition and Growth
Ensuring adequate nutrition and healthy growth is important for children with myelomeningocele. Some infants may experience feeding difficulties or slower weight gain, especially with associated complications like brainstem dysfunction. As they grow, there can be an increased risk for overweight or obesity due to reduced physical activity and altered metabolism. A balanced, fiber-rich diet supports overall health and assists with bowel management. Working with a nutritionist can help tailor dietary plans to meet individual needs and promote healthy development.
The Multidisciplinary Care Team
Managing myelomeningocele requires a coordinated, comprehensive approach involving many healthcare specialists. This multidisciplinary team addresses the child’s diverse and evolving needs. Key team members include:
Pediatric neurosurgeons: Oversee spinal defect repair and manage conditions like hydrocephalus.
Urologists: Specialize in neurogenic bladder management.
Orthopedists: Address bone and joint issues, including limb deformities and scoliosis.
Physical and occupational therapists: Promote mobility, strength, and daily living skills.
Developmental pediatricians: Monitor growth and development, identifying learning differences or delays.
Social workers: Provide support and resources to families, helping them navigate the healthcare system and access community services.
Nurse coordinators: Play an important role in coordinating appointments and communication among specialists.
Other team members may include nutritionists, psychologists, and special education teachers, all collaborating to support the child’s physical, emotional, and educational well-being.
Empowering Parents and Family Support
Parents play an important role in caring for a child with myelomeningocele, becoming knowledgeable advocates for their child’s needs. Learning about the condition and actively participating in daily care routines (e.g., clean intermittent catheterization or bowel programs) empowers families to manage complex medical requirements. This involvement extends to advocating for appropriate educational and developmental services.
Caring for a child with myelomeningocele can be demanding. Seeking support from others who understand these experiences is beneficial. Connecting with other families through support groups provides a network for sharing insights, coping strategies, and encouragement. Accessing educational resources from healthcare providers and spina bifida organizations offers valuable information and guidance. Early intervention programs also provide developmental support for infants and toddlers, helping maximize their potential.