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PubMed This is a summary of 32 peer-reviewed journal articles Updated
Urology

Growing Up: Transition to Adult Care and Lifelong Needs

At a Glance

Transitioning to adult spina bifida care is gradual and often begins in the early teens, with practice in daily care, appointments, supplies, and insurance. Lifelong follow-up helps protect kidney, bladder, brain, mobility, sexual, and mental health and catch complications early.

As you move into adulthood, your spina bifida care will shift from being managed by parents and pediatricians to being managed by you. This transition is not a single event but a gradual process of gaining independence. While the “surgeries of childhood” may be behind you, spina bifida requires lifelong, proactive maintenance to ensure your kidneys, brain, and body remain healthy [1][2].

Mastering Self-Management

Transitioning to adult care should begin early—often in your early teens—so you have time to practice the skills needed for independence [3]. This includes moving beyond medical tasks like Clean Intermittent Catheterization (CIC) and learning the logistical side of healthcare [4].

Key milestones for self-management include:

  • Medical Knowledge: Knowing your exact diagnosis (e.g., myelomeningocele at the L3 level), your surgical history, and keeping a portable emergency summary regarding your shunt status, latex plan, and medication list [5].
  • Daily Care: Independently performing skin checks, managing your bowel program, and recognizing when a urinary tract infection (UTI) requires treatment versus when it is just asymptomatic bacteriuria [6][4].
  • Logistics: Learning how to schedule appointments, order medical supplies, and navigate health insurance [7][8].

Tools like the TRAQ-SB (Transition Readiness Assessment Questionnaire for Spina Bifida) can help you and your doctors identify which skills you have mastered and which ones still need practice [9][10].

Lifelong Medical Maintenance

Even if you feel perfectly healthy, your body still needs regular “check-ups” to prevent secondary complications. A successful adult care model is multidisciplinary, meaning it involves a coordinated team of specialists [11][12].

Kidney and Bladder Health

The risk to your kidneys does not disappear with age. Care plans must be individualized based on bladder pressures and prior kidney changes:

  • Surveillance: Many adults need periodic renal ultrasounds and kidney function tests based on a written individualized plan [12][13]. Standard blood tests (creatinine) can look misleadingly reassuring in someone with low muscle mass, so the adult team may use Cystatin C or other estimated filtration assessments [14].
  • Symptom-Triggered Tests: If you notice new leaking, more frequent infections, or changes in your kidney tests, your doctor will likely order urodynamics to check if bladder pressures have changed [13][15].

Neurosurgical Awareness

While shunt failures are less frequent in adults than in children, they can still happen. Remember that in adults with spina bifida, a shunt can fail even if a CT or MRI looks exactly the same as your “baseline” scan [16]. Any new or worsening neurological symptoms—such as severe headaches, vision changes, or a decline in walking ability—require an immediate neurosurgical evaluation [16][17].

Sexual Health and Fertility

Sexual health is an important part of adult life, yet it is often overlooked in medical appointments. It is important to have frank, open conversations with your healthcare team about your goals [18].

For Men

Most men with spina bifida can have sexual relationships, though they may face challenges with erections or ejaculation [19].

  • Function: Medications like PDE5 inhibitors (e.g., sildenafil) are often effective for erectile dysfunction, but require clinician review for medication interactions and cardiovascular safety [19].
  • Fertility: Ejaculation may be “retrograde” (going into the bladder) or absent. However, modern techniques like sperm retrieval and assisted reproduction—such as IVF (In Vitro Fertilization) or ICSI (Intracytoplasmic Sperm Injection)—make biological fatherhood possible for many [20][21].

For Women

Many women with spina bifida can conceive and have healthy pregnancies, though fertility, renal function, mobility, and respiratory status vary greatly [22][18].

  • Preconception Review: Before becoming pregnant, schedule reviews with maternal-fetal medicine, urology, and a pharmacist to review your medications [23].
  • Pregnancy Planning: Because the risk of neural tube defects is higher, it is vital to discuss high-dose folic acid supplementation with a doctor before becoming pregnant. Do not self-start high doses without medical advice [23].
  • Gynecological Care: Routine discussions should include contraception options, menstrual management, and how pregnancy might impact bladder care, pressure injuries, or shunt symptoms [22][24][25].
  • Delivery: While many women have Cesarean sections, vaginal delivery is often possible depending on your spinal anatomy and hip flexibility [26].

Mental Health and Secondary Conditions

Adulthood with spina bifida brings unique physical and emotional challenges.

  • Secondary Conditions: Adults have a higher risk of obesity, metabolic syndrome, bone health/fracture issues, and chronic musculoskeletal pain due to years of altered mobility [27][28].
  • Mental Health: Depression, anxiety, and social isolation are common [29]. While improving your physical “continence” can often help, mental health symptoms deserve direct assessment and treatment on their own merits [29][30].

Seeking out a “medical home” that includes a social worker or psychologist can provide the emotional and practical support needed to navigate these lifelong needs [31][32].

Common questions in this guide

When should I start transitioning from pediatric to adult spina bifida care?
Transition is usually a gradual process that can start in the early teenage years, rather than a single handoff. Practice should include daily bladder and bowel care, knowing your medical history, scheduling visits, ordering supplies, and handling insurance. A transition questionnaire such as the Transition Readiness Assessment Questionnaire for Spina Bifida can help identify skills that still need practice.
What kidney tests might I need as an adult with spina bifida?
Adults with spina bifida may need kidney ultrasounds and kidney-function testing on an individualized schedule. Because creatinine can appear reassuring in people with low muscle mass, clinicians may also use cystatin C or another estimate of kidney filtration. New leakage, more frequent urinary infections, or changed kidney results may lead to urodynamic testing to measure bladder pressures.
Can a shunt fail even if my CT or MRI looks unchanged?
Yes. A shunt can fail even when a CT or MRI looks unchanged from an earlier baseline scan. New or worsening severe headaches, vision changes, or a decline in walking ability should prompt immediate neurosurgical evaluation.
Can people with spina bifida have sex or biological children?
Many people with spina bifida can have sexual relationships, although erections, ejaculation, or fertility may be affected. Treatments such as sildenafil may help erectile dysfunction when prescribed safely, and sperm retrieval with in vitro fertilization or intracytoplasmic sperm injection can help some men become biological fathers. Many women can also conceive, but pregnancy planning should account for kidney function, mobility, respiratory health, medications, and bladder care.
What should I do before becoming pregnant if I have spina bifida?
Before pregnancy, arrange a preconception review with maternal-fetal medicine, urology, and a pharmacist to review your medicines. Ask how your kidney function, mobility, bladder care, and shunt symptoms could affect pregnancy and delivery. Because the risk of neural tube defects is higher, discuss high-dose folic acid before pregnancy and do not start a high dose without medical advice.
What does independent self-management involve for adults with spina bifida?
Independent care includes performing catheterization and bowel care, checking areas of reduced sensation for skin injury, knowing your medicines, ordering supplies, and keeping an emergency summary. Learning the difference between urinary infection symptoms and asymptomatic bacteriuria, which means bacteria in the urine without symptoms, can help guide appropriate care with your clinician. A backup plan for illness or travel can help maintain care safely.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What is my specific plan for transitioning to adult specialists, and has a written medical summary been sent to them?
  2. 2.How often should I continue to have renal ultrasounds and kidney function tests as an adult?
  3. 3.Can you refer me to a specialist who can discuss sexual health, fertility, and family planning specifically for someone with spina bifida?
  4. 4.What are my options for managing contraception or menstrual concerns related to my condition?
  5. 5.How can we monitor for long-term complications like tethered cord or shunt failure now that I am an adult?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

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This page is for informational purposes only and does not constitute medical advice. Your spina bifida care team should tailor monitoring, pregnancy planning, sexual-health care, and emergency guidance to your needs.

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