Spina bifida is a congenital condition that affects the spine, occurring when the neural tube does not close completely during fetal development. Medical and surgical advancements have significantly improved outcomes, and today, most individuals born with spina bifida live well into adulthood. This longevity introduces a new set of health and lifestyle considerations that are unique to the adult experience. Understanding these challenges and management strategies is part of navigating a fulfilling adult life.
Long-Term Health Considerations
As individuals with spina bifida age, they face persistent and evolving health challenges. A primary neurological concern is tethered cord syndrome, which happens when scar tissue restricts the spinal cord’s movement. This can lead to new or worsening symptoms, such as changes in leg strength, altered bladder or bowel function, and back pain. Shunt malfunctions can also occur in adults, presenting with symptoms like headaches, vomiting, or cognitive changes that require prompt neurosurgical evaluation.
Urological and bowel management are continuous health priorities. The nerves controlling the bladder and bowel are affected, leading to neurogenic bladder and bowel. This often means an inability to empty the bladder completely or store urine effectively, necessitating a regular catheterization schedule to prevent urinary tract infections. Inadequate bladder management poses a long-term risk of kidney damage, making routine monitoring by a urologist a necessary component of adult care. Neurogenic bowel dysfunction also requires a consistent management program to prevent constipation and incontinence.
The musculoskeletal system also requires ongoing attention. Orthopedic issues such as scoliosis, an abnormal curvature of the spine, can progress or develop over time. Joint pain is common, particularly in the back, hips, and knees, often due to altered gait mechanics or the increased stress placed on the upper body for mobility. Foot and ankle deformities may also worsen, impacting stability and comfort.
Maintaining skin integrity is a lifelong challenge due to reduced or absent sensation in the lower body. This lack of feeling means that pressure from sitting or from braces can go unnoticed, leading to the development of pressure sores or ulcers. These sores can become seriously infected if not identified and treated early, so daily skin inspection is a fundamental practice for preventing serious complications.
Managing Daily Independence
Living independently with spina bifida in adulthood is supported by consistent self-care routines and the use of adaptive tools. Mobility aids, such as wheelchairs, crutches, or braces, are common, and the specific type of equipment needed may change over time due to age-related shifts in strength or joint health. An individual who walked with braces in their youth may find a wheelchair more efficient and less strenuous for mobility as they get older.
Daily health maintenance relies on established routines for bladder and bowel care. Following a strict schedule for clean intermittent catheterization is necessary to protect kidney function. Likewise, a predictable daily bowel program helps ensure regularity and avoid accidents, which supports social confidence and overall wellbeing.
Independence is often enhanced by adaptive equipment in the home and workplace. Modifications like accessible bathrooms with grab bars, lowered kitchen counters, or ergonomic workstations can make daily tasks more manageable. These adaptations allow individuals to conserve energy and perform activities safely, promoting greater self-sufficiency.
Social and Emotional Wellbeing
Adulthood with spina bifida involves navigating unique social and emotional challenges. Adults with the condition may face a higher likelihood of experiencing anxiety or depression. These mental health concerns can stem from managing a chronic health condition, social experiences, or pain, making it important to seek professional support when needed.
Building and maintaining relationships, including friendships and romantic partnerships, is a significant part of adult life. Open communication about the condition can help foster understanding with partners. Discussions around sexuality and family planning are also relevant, and women with spina bifida should consult with their doctor about taking higher-than-standard doses of folic acid before a pregnancy to reduce the risk of having a child with a similar condition.
Connecting with a community of peers provides invaluable support. Finding support groups or online forums with other adults who have spina bifida allows for the sharing of experiences, advice, and encouragement. This peer connection can reduce feelings of isolation and empower individuals with practical knowledge from others who understand their specific life circumstances.
Navigating Specialized Adult Care
A significant challenge for adults with spina bifida is the transition from a pediatric healthcare setting to one focused on adult medicine. Most physicians specializing in adult care have not been trained in conditions that were once considered exclusively pediatric disorders. This gap in expertise necessitates finding healthcare providers who are knowledgeable about the complex, multi-system needs of adults with spina bifida.
Effective adult care is best delivered by a multidisciplinary team of specialists. This team often includes:
- A physiatrist (a rehabilitation physician)
- A urologist
- A neurosurgeon
- An orthopedic surgeon
All should have experience with the adult spina bifida population. Coordinated care among these specialists helps ensure that all aspects of the condition are managed cohesively.
The focus of adult care shifts towards proactive health management and prevention. Regular, scheduled check-ups with the specialized care team are designed to anticipate and address potential problems before they become severe. This forward-looking approach helps in maintaining function, preventing secondary complications, and supporting overall health.