Famous People Who Have or Had Spina Bifida

Author: Ian C. Langtree - View Credentials
Published: 10 Nov 2017 - Updated: 8 Aug 2026
Publication Type: Awareness, Appreciation

Table of Contents:
Synopsis - Definition - Overview - FAQs - Insights, Updates - Related Content

Synopsis

This information provides a comprehensive and authoritative overview of notable individuals - past and present - who were born with spina bifida, the most common permanently disabling birth defect in the United States, affecting approximately 1,500 babies annually. The article explains the medical background of spina bifida, detailing its four main types and the challenges it presents, such as nerve damage and the need for early surgical intervention to prevent further complications.

The list includes a diverse array of accomplished figures, from athletes like Aaron Fotheringham and Tanni Grey-Thompson to artists such as Lucinda Williams and Riva Lehrer, as well as advocates and professionals like Catalina Devandas Aguilar and Dr. Karin Muraszko. This resource is particularly useful for people with disabilities, their families, and advocates, as it highlights real-world examples of individuals who have achieved prominence in various fields despite the challenges of spina bifida, offering both representation and practical insights into living with the condition. The information's authority is reinforced by the expertise of the author, who has a deep background in disability advocacy and the social model of disability, ensuring the content is accurate, inclusive, and relevant to a wide audience.

At a Glance

• 1 - Spina bifida is the most common permanently disabling birth defect in the United States, affecting about 1,500 babies each year.
• 2 - The term comes from Latin meaning "split spine," and the malformations fall into four categories, most often occurring in the lumbar and sacral areas.
• 3 - Neural tube defects can usually be detected during pregnancy through AFP blood screening or a detailed fetal ultrasound, and surgeons operate to close the opening on the back to prevent further nerve damage and infection.

Topic Definition

Spina Bifida

Spina bifida, from the Latin for "split spine," is a congenital disorder that develops when the embryonic neural tube fails to close completely, leaving some of the vertebrae over the spinal cord unfused and open. When the opening is large enough, part of the spinal cord can push through the gap in the bones, and the malformations are typically grouped into four types, including meningocele, myelomeningocele, spina bifida occulta, and spina bifida cystica. The defect most commonly appears in the lumbar and sacral regions, where the affected nerves control the muscles of the hip, leg, knee, and foot, and it can sometimes accompany other malformations. There is no cure for the resulting nerve damage, so pediatric neurosurgeons operate to close the opening on the back, protecting the exposed tissue and guarding against infection and further harm.

Overview

Spina bifida (Latin: "split spine") is a developmental congenital disorder caused by the incomplete closing of the embryonic neural tube. Some vertebrae overlying the spinal cord are not fully formed and remain un-fused and open. If the opening is large enough, this allows a portion of the spinal cord to protrude through the opening in the bones.

Spina bifida malformations fall into four categories:

• Meningocele
• Myelomeningocele
• Spina bifida occulta
• Spina bifida cystica (Myelomeningocele)

Neural tube defects can usually be detected during pregnancy by testing the mother's blood (AFP screening) or a detailed fetal ultrasound. Spina bifida may be associated with other malformations as in dysmorphic syndromes, often resulting in spontaneous miscarriage. The most common location of the malformations is the lumbar and sacral areas of the spinal cord. The lumbar nerves control the muscles in the hip, leg, knee and foot, and help to keep the body erect. There is no cure for nerve damage due to spina bifida. To prevent further damage of the nervous tissue and to prevent infection, pediatric neurosurgeons operate to close the opening on the back.

List of Famous People With and Who Had Spina Bifida

Frequently Asked Questions

What other factors, besides low folic acid, increase the risk of spina bifida?

Along with insufficient folic acid, risk factors can include certain anti-seizure medications taken during pregnancy, poorly controlled diabetes, obesity, and a family history of neural tube defects. Combinations of these genetic and environmental influences are thought to affect how the neural tube develops in early pregnancy.

Can spina bifida be treated with surgery before a baby is born?

In some cases of myelomeningocele, the most severe form, specialized fetal surgery can be performed before birth to close the opening in the spine, which may help reduce certain complications such as the need for a shunt later on. This prenatal option is not suitable for every pregnancy and is typically available only at specialized medical centers.

What is hydrocephalus, and why is it common in people with spina bifida?

Hydrocephalus is a buildup of excess fluid within the brain that increases pressure and can affect development if untreated. It occurs frequently in people with the more severe forms of spina bifida because the same neural tube irregularities that cause the spinal defect can also disrupt normal fluid drainage in the brain.

What is a shunt, and how is it used to manage hydrocephalus?

A shunt is a thin tube surgically placed in the brain to drain excess fluid to another part of the body, such as the abdomen, where it can be absorbed safely. Many people with spina bifida and hydrocephalus rely on a shunt for life and require monitoring to watch for blockages or infections.

Why are latex allergies more common among people with spina bifida?

Repeated early and ongoing exposure to latex through multiple surgeries and medical procedures appears to increase sensitization in people with spina bifida compared to the general population. Because of this, many hospitals now use latex free equipment and supplies for patients with the condition as a precaution.

What is Chiari II malformation, and how does it relate to spina bifida?

Chiari II malformation is a structural difference in which part of the brain extends downward into the upper spinal canal, and it occurs almost exclusively in people with myelomeningocele. It can contribute to hydrocephalus and, in some cases, cause symptoms affecting breathing, swallowing, or coordination that require medical monitoring.

How do bladder and bowel function get affected by spina bifida, and how is this managed?

Because the nerves controlling the bladder and bowel often originate in the same spinal region affected by spina bifida, many people experience difficulty with bladder or bowel control. Management commonly includes scheduled catheterization, bowel training programs, and sometimes medication or surgery to help prevent infections and maintain independence.

NOTE: If you notice any inaccuracies in this list, please reach out to us so we can correct it. Additionally, if you believe someone should be added to this list, please provide us with their name and any information to verify their disability. We value your help, and you can contact us here.

You can also view our other lists of famous and well-known people with various disabilities and conditions, including actors, politicians, and writers who contributed to society.

Insights, Analysis, and Developments

Editorial Note: This editorial insight underscores the importance of visibility and recognition for people with spina bifida, challenging stereotypes and fostering a broader understanding of disability. By showcasing the achievements of these individuals, the article not only informs but also inspires ongoing conversations about accessibility, inclusion, and the diverse contributions of people with disabilities to society. Highlighting the accomplishments of individuals with spina bifida serves as a powerful reminder that physical limitations do not define one's potential. These stories challenge societal perceptions of disability and underscore the importance of inclusivity and accessibility. By recognizing and celebrating these achievements, we not only honor the individuals but also inspire broader conversations about the capabilities and contributions of people with disabilities.

Author Credentials: Ian C. Langtree is a writer, editor, and the founder and Editor-in-Chief of Disabled World, which he established in 2004 as one of the longest-running independent resources for disability news and information. Over more than two decades, he has written and edited thousands of articles on disability rights, health, accessibility, and assistive technology. Drawing on a global perspective shaped by extensive travel and lived experience, Ian is a committed advocate of the Social Model of Disability, the framework developed by disabled activists in the 1970s that focuses on removing societal barriers rather than on individual impairments. His writing is grounded in that framework and in a lasting commitment to disability rights, accessibility, and social inclusion. To learn more about Ian's background, expertise, and accomplishments, visit his full biography.