A New Era of Longevity for Spina Bifida
Not long ago, spina bifida was considered a condition of childhood, with few individuals surviving into their adult years. Today, thanks to decades of medical advancements, that perception has been completely overturned. The question is no longer if a person with spina bifida will reach adulthood, but how they can thrive throughout a long life. This remarkable shift prompts curiosity about the limits of longevity, leading many to ask: how old is the oldest person with spina bifida?
While tracking a definitive 'oldest person' is challenging, the most widely cited example is Albert De Greve of Belgium. Born in 1923, he celebrated his 90th birthday in 2013. His life spanned an era of monumental changes in the treatment of this complex birth defect. Mr. De Greve himself noted that being born without hydrocephalus—a common and once-fatal complication—was a key factor in his early survival. His story is not just a statistic; it is a powerful symbol of hope and progress for the entire spina bifida community.
Understanding Spina Bifida: A Brief Overview
Spina bifida is a type of neural tube defect that occurs when the spinal column does not form properly in the first few weeks of pregnancy. The severity of the condition varies significantly depending on the type:
- Myelomeningocele: The most common and severe form, where the spinal canal remains open, allowing both the membranes and the spinal cord to protrude through an opening in the back. This typically results in nerve damage and some level of paralysis.
- Meningocele: In this rarer form, a sac of spinal fluid protrudes through the spine, but the spinal cord is not in the sac. It may cause minor disabilities.
- Spina Bifida Occulta: The mildest and most common form, often called 'hidden' spina bifida. It involves a small gap in the spine but no opening on the back. The spinal cord and nerves are usually normal, and many people with this type have no symptoms.
The Medical Advancements That Changed Everything
The dramatic increase in life expectancy is a direct result of key medical breakthroughs that addressed the most life-threatening complications of spina bifida. In the mid-20th century, most deaths were due to untreated hydrocephalus (fluid buildup in the brain) or kidney failure.
The development of the cerebrospinal fluid (CSF) shunt in the 1950s and 60s was revolutionary. This device drains excess fluid from the brain, relieving pressure and preventing catastrophic brain damage. Alongside advancements in neurosurgery, improved urological care—particularly the introduction of clean intermittent catheterization (CIC)—has been crucial for preventing the kidney damage that was once a leading cause of death in young adults.
Comparison Table: Spina Bifida Care Then vs. Now
| Feature | Mid-20th Century (c. 1950s) | Today (2020s) |
|---|---|---|
| Life Expectancy | Often limited to childhood or early adulthood. | 85-90% live to adulthood; median age at death is now in the 50s and rising. |
| Hydrocephalus Mgt. | Limited to no effective treatment. | Routine treatment with CSF shunts and ETV procedures. |
| Urological Care | Poorly managed, leading to frequent infections and kidney failure. | Proactive management with CIC, medications, and surgical options to preserve kidney function. |
| Mobility | Often confined; limited adaptive equipment. | Advanced wheelchairs, orthotics (braces), and adaptive sports promote active lifestyles. |
| Care Model | Single-specialty, reactive care. | Multidisciplinary clinics providing proactive, coordinated care for life. |
Navigating Health Challenges in Adulthood
As more people with spina bifida live longer, a new focus has emerged on the unique challenges of aging with the condition. Lifelong, proactive care is essential to manage these issues:
- Kidney and Bladder Health: The neurogenic bladder requires consistent management to prevent urinary tract infections, stones, and a decline in kidney function over time.
- Shunt Function: CSF shunts can malfunction at any age, even after decades of working perfectly. Symptoms like headaches, vomiting, or lethargy require immediate medical evaluation.
- Skin Integrity: Reduced sensation in the lower body creates a high risk for pressure sores from wheelchairs, braces, or unnoticed injuries. Daily skin checks are critical.
- Mobility and Pain: Arthritis, joint deformities, and chronic pain can increase with age. Maintaining mobility may require new strategies, physical therapy, or updated equipment.
- Mental Health: Living with a chronic condition presents unique stressors. Rates of depression and anxiety can be higher, making mental health support a vital component of overall wellness.
5 Strategies for Healthy Aging with Spina Bifida
For adults living with spina bifida, a proactive approach to health can make all the difference in quality of life. The focus is on prevention, management, and empowerment.
- Establish a Multidisciplinary Care Team: Transition from pediatric to adult care providers who specialize in spina bifida. This team should include a primary care physician, urologist, neurosurgeon, orthopedist, and physical therapist.
- Prioritize Proactive Monitoring: Regular appointments and screenings for kidney function, shunt performance, and skin health are non-negotiable. Don't wait for a problem to arise.
- Stay Active and Nourished: Engage in adaptive physical activities to maintain strength, flexibility, and cardiovascular health. A balanced diet is crucial for bone health, weight management, and bowel regularity.
- Become Your Own Health Advocate: Understand your medical history, medications, and specific needs. Being able to clearly communicate with healthcare providers is an essential skill for managing your own care.
- Build a Strong Support System: Connect with others in the spina bifida community. Peer support can provide invaluable emotional and practical advice. The Spina Bifida Association offers extensive resources and connections for adults.
Conclusion: A Future of Possibility
The story of longevity in the spina bifida community is one of remarkable medical success and human resilience. Individuals like Albert De Greve have paved the way, demonstrating that a long, fulfilling life is not the exception but an achievable goal. While significant challenges remain, the focus on proactive, lifelong adult care ensures that future generations will continue to redefine what is possible, pushing the boundaries of healthy aging with spina bifida even further.
