Nebraska Spina Bifida Inc.

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Nebraska Spina Bifida Inc. Nebraska Spina Bifida is a network of adults and children living with spina bifida and the families, friends, and medical professionals who support them.

Nebraska Spina Bifida has been serving individuals with spina bifida and their families since 1983.

Spina Bifida causes a neurogenic bladder in nearly all affected individuals because the spinal cord nerves that control ...
10/15/2026

Spina Bifida causes a neurogenic bladder in nearly all affected individuals because the spinal cord nerves that control bladder storage and emptying fail to form properly during development.

How It Affects the Bladder

• Loss of Coordination: Signals between the brain, spinal cord, and bladder muscles are disrupted, meaning the person may not feel when the bladder is full.

• Storage and Emptying Problems: The bladder may hold too little urine under high pressure (overactivity/poor compliance) or fail to empty completely (retention), which can push urine back toward the kidneys.

• Risk of Complications: Without proper management, high pressure and incomplete emptying can lead to urinary tract infections (UTIs), hydronephrosis (kidney swelling), and long-term kidney damage.

Standard Management & Treatment

• Clean Intermittent Catheterization (CIC): A soft, flexible tube is inserted regularly to drain urine safely, protect the kidneys, and help achieve continence.

• Medications: Anticholinergics (such as oxybutynin) are often prescribed to relax the bladder muscle, increase storage capacity, and lower bladder pressure.

• Proactive Monitoring: Regular tracking using kidney ultrasounds and urodynamic studies helps catch and treat changes early.

• Surgical Options: Procedures like bladder neck slings, detrusorectomy, augmentation cystoplasty, or catheterizable stomas (such as a Mitrofanoff) may be used if conservative measures are not enough.

The daisy is the official flower and symbol representing spina bifida and hydrocephalus.What the Parts of the Daisy Mean...
10/15/2026

The daisy is the official flower and symbol representing spina bifida and hydrocephalus.

What the Parts of the Daisy Mean

• Center (Heart): Represents the brain, which can be affected by hydrocephalus (a buildup of fluid in the brain often linked to spina bifida).

• Petals: The cloven or split petals represent the various spinal lesions caused by the condition.

• Stem and Leaves: The irregular shape of the stem and leaves depicts the unusual form of the spinal cord and backbone.

• Overall Beauty: Reflects the strength, resilience, and beauty of individuals living happy and productive lives with spina bifida.

Did you know the movie Miracle In Lane 2 is based on the real life story about Justin Yoder? Justin was a former soapbox...
10/13/2026

Did you know the movie Miracle In Lane 2 is based on the real life story about Justin Yoder?

Justin was a former soapbox racer. He was the first child with a disability (spina bifida and hydrocephalus) to drive a soapbox in the All American Soapbox Derby. In 1996, he challenged the regulations to allow children with disabilities to use a hand brake instead of the required foot brake. Thanks to him, regulations were changed. The hand brake is now called the Justin Brake in his honor.

Sadly, the spina bifida community lost Justin to a horrific motor vehicle accident in September 2024.

www.nebraskaspinabifida.org

Did you know it is common for individuals with spina bifida—particularly those with myelomeningocele spina bifida —to ha...
10/12/2026

Did you know it is common for individuals with spina bifida—particularly those with myelomeningocele spina bifida —to have their hips out of socket (subluxated or dislocated).

Key Facts About Hip Dislocation in Spina Bifida

• Prevalence: Roughly 30% to 50% (and in some studies up to 55%) of children and individuals with myelomeningocele develop a hip dislocation or severe dysplasia by skeletal maturity.

• Cause: The dislocation happens because of an imbalance in muscle strength around the hip joint. Certain muscles (flexors and adductors) may pull strongly while opposing muscles (extensors and abductors) are paralyzed or weakened by the spinal nerve deficit. Over time, this imbalance pulls the ball of the femur (thigh bone) out of the socket (acetabulum).

• Impact on Function: Historically, doctors routinely performed major surgeries to put the hip back in place. However, modern orthopedic research shows that a dislocated hip does not always hurt or ruin long-term movement. A person's ability to walk or sit is usually tied more to their neurological level of involvement (where the spinal opening is located) rather than whether the hip is inside or outside the socket.

• Current Treatment Approach: Many specialists now focus on managing tight muscles (contractures) and keeping the hips flexible and moving comfortably, rather than aggressively trying to surgically reduce every hip dislocation unless it causes specific pain, severe asymmetry, or functional problems.

Chiari malformation type 2 is nearly always associated with a form of spina bifida called myelomeningocele. When the cer...
10/11/2026

Chiari malformation type 2 is nearly always associated with a form of spina bifida called myelomeningocele. When the cerebellum is pushed into the upper spinal canal, it can interfere with the normal flow of cerebrospinal fluid that protects the brain and spinal cord.

Chiari II malformation mainly involves the lower brainstem and lower most portion of the cerebellum, but the layout of the whole brain is also affected. The brainstem contains many of the nerves which control the heart, breathing, blood pressure and help control swallowing, sneezing and coughing.

www.nebraskaspinabifida.org

You may not notice what your child learns from inclusive toys and media until those lessons appear in real life.They may...
10/08/2026

You may not notice what your child learns from inclusive toys and media until those lessons appear in real life.

They may see a wheelchair user at the store and, instead of staring, they say, "I have a doll that uses a wheelchair too."

They might notice someone with hearing aids and already understand how they work.

They might meet a child who uses an AAC device and understand that some people communicate by speaking with a tablet.

They might see a person with a prosthetic leg and recognize it as something that helps them move through the world.

They might meet a child with a feeding tube and understand that not everyone gets nutrition in the same way.

When kids see disability represented, they learn that mobility aids, prosthetics, hearing devices, different ways of communicating, and disabled bodies are all normal parts of life.

Kids are naturally curious. When disability is hidden from them, that curiosity can turn into discomfort.

When disability is included in toys, books, television shows, and movies, inclusion starts before a disabled person ever enters the room.

Image Description: A close-up picture of a blonde wheelchair using Barie inside the package.

Spina bifida is a neural tube defect that develops very early in pregnancy, when the baby’s spine and spinal cord are fo...
10/07/2026

Spina bifida is a neural tube defect that develops very early in pregnancy, when the baby’s spine and spinal cord are forming. It can affect people very differently—some people have mild effects, while others may have significant physical or neurological challenges.
Here are the basics:
🧠 What happens: The neural tube doesn’t completely close during early development, which can affect the spinal cord, nerves, and surrounding vertebrae.
🦴 Types: The main types are spina bifida occulta, meningocele, and myelomeningocele. Myelomeningocele is generally the most significant form.
♿ Possible effects: Depending on where and how the spinal cord is affected, someone might have differences in leg movement or sensation, bladder or bowel function, hydrocephalus, or other neurological complications. Not everyone experiences the same things.
🧬 Why it happens: It results from a combination of genetic and environmental factors. Folic acid before conception and during early pregnancy substantially reduces the risk, although it doesn't prevent every case.
❤️ It's lifelong: There isn't a single "cure," but medical care, rehabilitation, assistive technology, and other supports can help people manage complications and live active, fulfilling lives.
👩‍⚕️ Care is individualized: Treatment can involve specialists such as neurologists, neurosurgeons, urologists, orthopedists, rehabilitation professionals, and others, depending on the person's needs.
And importantly, spina bifida doesn't define someone's intelligence, personality, or worth. People with spina bifida have a huge range of abilities, interests, careers, relationships, and life experiences.
www.nebraskaspinabifida.org

Borrowed from a friend. But this is so true! 🙂I understand the importance of October being Breast Cancer Awareness Mont...
10/06/2026

Borrowed from a friend. But this is so true! 🙂

I understand the importance of October being Breast Cancer Awareness Month and advocating for breast self exams, mammograms and such. I really do. So, please don't mistake that. But I do wish that more people were aware that October is also Spina Bifida Awareness Month.

There is no treatment or cure to get rid of it. Once you're born with it, you have it for the rest of your life. And it affects your life and that of your loved ones in a way that you can't imagine unless you do have it yourself. It's a lifetime financial cost of $532,000-$1,000,000....much of which isn't always paid by insurances because of the "pre-existing condition".

It's things beyond our control that most take for granted with their health...just ordinary living. It's pressure sores. It's deadly infections. It's a lifetime of surgeries, specialists and doctors' visits. It's deadly allergic reactions to latex for most. It's kids suffering ostracism from their schoolmates for "being different". Its mental and social issues for some. Its a minimum of 166,000 living with this disability in the US alone. Its abortions because moms cant handle dealing with these issues.

There is no KNOWN cause. There are only hypothetical guesses as to why it occurs--which happens in one out of every 10,000 births. It's the most common permanently disabling birth defect in the US--its more common than Muscular Dystrophy and Cerebral Palsy(which are both well known and advocated for disabilities) combined. Folic acid MIGHT HELP prevent it.

http://spinabifidaassociation.org/
www.nebraskaspinabifida.org

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7612 Maple Street
Omaha, NE
68134

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