Growing Up: Development and the Path to Adulthood

As a child with myelomeningocele grows, the focus of care evolves from physical survival and initial surgeries to long-term independence, social participation, and quality of life. Growing up with this condition involves preparing for a gradual “hand-off” of responsibility from parent to child ^[1][2]. While the journey has its challenges, proactive planning can help your child transition into a fulfilling adult life marked by supported independence.

Navigating Cognitive and Learning Styles

Children with myelomeningocele—particularly those with hydrocephalus—often have specific learning styles. While intelligence varies widely and many children perform well academically, some experience challenges with executive function—the brain’s management system ^[3][4]. This can include:

• Working Memory: Difficulty holding and using multiple pieces of information at once ^[4].
• Organization and Planning: Challenges with starting tasks or organizing school materials ^[3].
• Social Cognition: Difficulty reading subtle non-verbal social cues ^[5].

Rather than viewing these as fixed deficits, families can use neuropsychological evaluations (when screening or functional concerns indicate a need) to secure supportive accommodations (like an IEP or 504 plan). Accommodations allow the school to play to the child’s strengths ^[3][6].

The Importance of Continence for Quality of Life

Research consistently shows that for adults with spina bifida, achieving predictable bowel and bladder management is highly associated with health-related quality of life (HRQoL) ^[7][8].

• Social Well-being: Incontinence can be a barrier to social participation and increase the risk of isolation or bullying ^[5][9].
• Mental Health: There is a known correlation between persistent incontinence and higher rates of depression and anxiety ^[7].
  Working closely with the urology team to fine-tune a program that works for the teen’s lifestyle is a major priority ^[10][11].

Transitioning to Adult Care

Transition is a gradual process that should ideally begin in early adolescence ^[1]. The goal is to move from parent-managed care to self-management or supported decision-making ^[2].

• The Transfer of Responsibility: This starts with small steps, such as having the child name their medications. Eventually, they should learn the steps of Clean Intermittent Catheterization (CIC) and bowel routines ^[6][2].
• Health Literacy: Young adults need to understand their medical history so they can advocate for themselves in adult healthcare settings ^[12][13].
• Establishing Adult Providers: Adult care requires coordinating between primary care, adult urology, neurosurgery, and Physical Medicine & Rehabilitation (PM&R) ^[1][14].

Sexual and Reproductive Health

As teens enter puberty, discussions about sexual health are critical. Spina bifida can affect sexual function and sensation, but it does not prevent a fulfilling sex life or the ability to have children. Most women with spina bifida can become pregnant and carry a child, though they require high-risk maternal-fetal medicine care and specific contraception counseling ^[14]. Open, honest conversations with the care team about sexual health, fertility, and safe pregnancy planning should be a routine part of transition care.

Looking Toward the Future: Education and Work

Young adults with spina bifida pursue higher education, meaningful employment, and rich community lives. While population-level data suggests that factors like continence and lower-extremity mobility correlate with higher employment rates, these are not limits on an individual’s potential ^[15].

• Vocational Support: Vocational rehabilitation services can help with job coaching, workplace accommodations, and transportation.
• Social Support: Participation in adaptive sports, social groups, and community activities is a strong predictor of long-term happiness, fostering independence and a sense of meaning ^[5].

By focusing on the whole person—including mental health, relationships, and accessibility—you can help your child build a strong foundation for the future ^[16][13].