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Five Common Questions About Spina Bifida

Five Common Questions About Spina Bifida

by | Oct 24, 2025 | Pediatric Developmental Disabilities

We understand that learning your child has spina bifida can lead to many questions. However, families do not have to handle this journey alone.

At Scottish Rite for Children, a large team of doctors and medical experts are ready to treat children with spina bifida. Scottish Rite’s Spina Bifida Clinic offers a team approach that gives families a plan for each stage of their child’s life. Together, our Spina Bifida team will help every child with spina bifida reach their full potential.

1) What is spina bifida?

The term “spina bifida” means “split spine.” Spina bifida is a condition that occurs when a baby’s neural tube does not close or grow correctly while developing. The neural tube is the part that later becomes the brain and spinal cord. Spina bifida develops during the first month of pregnancy, often before the family knows about the pregnancy.

Spina bifida affects the brain and spinal cord (the central nervous system). It also affects other body systems that work together, like the bowel, bladder, swallowing, growth and skin. Spina bifida presents differently for each child. With the right care, most children with spina bifida will live bright and full lives.

2) What are the different types of spina bifida?

These are the three most common types of spina bifida:

  • Myelomeningocele (my-low-muh-NIN-juh-seal): This form of spina bifida is the most complex type. It affects the spine, spinal cord and the tube they are in (the spinal canal). Myelomeningocele happens when a baby is born with a sac filled with fluid that sticks out from an opening in their back. The sac holds part of the spinal cord and nerves. This causes nerve damage and other problems.
  • Meningocele (muh-NIN-juh-seal): With this type of spina bifida, a fluid-filled sac pushes through an opening in the spine. This sac contains the covering of the spinal cord, not the nerves. Nerve damage and symptoms may vary. Surgery is usually needed to remove the sac.
  • Spina Bifida Occulta (oh-KUL-tuh): “Occulta” means “hidden.” This type of spina bifida causes a small gap in the spine bones (vertebrae). Up to 20% of children with spina bifida have this form, and it usually does not have symptoms. Unlike other types of spina bifida, spina bifida occulta does not affect the nerves.

3) What causes spina bifida, and can it be prevented?

Doctors do not know the exact cause of spina bifida. Researchers think it is caused by a combination of factors, like a family’s genes or food.

Taking folic acid, also called vitamin B9, before pregnancy can lower the risk of a child developing spina bifida. Also, tests during pregnancy (prenatal tests) can help detect spina bifida. Doctors use test results to help families early by providing key information and resources before the baby is born.

 4) What are the main health issues for someone with spina bifida?

Spina bifida is a condition that lasts a lifetime and can affect many parts of a child’s health. Some of the main health issues include:

  • Bladder and Bowel Control: It is common for children with spina bifida to have problems with their bladder and bowel. This function depends on how well their nerves work. When the nerves that control the bladder and bowel do not work, it is hard for children to control when they go to the restroom. Children with spina bifida will often need help emptying their bladder and bowels, as well as staying dry during the day.
  • Mobility: There are many ways for children to move around. Depending on the type of spina bifida, some children can walk with little to no problems. Others may need braces, walkers or wheelchairs. As a child gets older and continues to grow, the way they move around may change.
  • Skin: Children with spina bifida often have less feeling in some body parts, like in their feet, legs or back. Because of this, wearing braces or spending long periods of time in a wheelchair can sometimes cause pressure sores. Pressure sores and blisters can turn into deep wounds or infections that are hard to heal. To prevent this issue, caregivers and the child should check the skin for injuries daily, like during bath time.

5) What does lifelong care for spina bifida look like?

Families come to Scottish Rite’s Spina Bifida Clinic at different points in their journey. Children with spina bifida need a team of medical experts who will partner with them to find the best treatment plan for every body part affected.

The care team includes:

  • Pediatric Developmental Disabilities (PDD): Medical Director of PDD Christine Murphy, M.D., developmental behavioral pediatrician Shanmuga Pujitha “Puji” Jonnalagadda, M.D., and physician Richard Adams, M.D., are at the forefront of spina bifida care and research. They work alongside advanced practice providers (APPs) to deliver compassionate, family-oriented and evidence-based care.
  • Neurosurgery: When a baby with spina bifida is born, evaluations and surgeries start with a neurosurgeon. Neurosurgeons complete the first step of treating spina bifida by closing the open spinal cord. Many babies with spina bifida have hydrocephalus (hy-dro-SEFF-uh-luss). This happens when the fluid around the brain does not drain fast enough. A tube, called a shunt, is placed inside the brain to drain the extra fluid. The shunt relieves the extra pressure that the slow-moving fluid causes. Each year, a neurosurgeon checks on the shunt to make sure it is working properly. 
  • Urology: Most children have issues with their bladder and bowel. A team of urologists, nurses and dietitians partner with families to create a plan to prevent common kidney complications. This team also helps children and families transition through each stage of urinary and bowel continence and achieve independence in their personal care.
  • Orthopedics: Scottish Rite’s pediatric orthopedic surgeons address problems with the muscles and bones, including conditions such as clubfoot, scoliosis and tightness related to the knees, hips or feet. They partner with experts in Orthotics & Prosthetics to create braces (orthoses) for children with this need.
  • Therapy Services: The Therapy Services team helps children with spina bifida become more independent.
    • Physical therapists provide exercises to help children move efficiently, with the goal of becoming more active and independent.
    • Occupational therapists help children develop the skills they need for success with daily activities, like putting on clothes or bathing.
    • Therapeutic recreation specialists help families find activities in the community that match their child’s interests and abilities.

Scottish Rite’s Spina Bifida team is committed to providing the best medical care for every child. When your child reaches adulthood, your care team will help them transition from pediatric to adult care, as well.

Getting treatment early, no matter which type of spina bifida your child has, often leads to more successful outcomes. If your child was diagnosed with spina bifida, Scottish Rite for Children’s Spina Bifida program can help. Request an appointment or call the Pediatric Developmental Disabilities department at 214-559-8673 to discuss spina bifida care.

Calling All Nurses: Volunteer at Scottish Rite for Children Camps

Calling All Nurses: Volunteer at Scottish Rite for Children Camps

by | Apr 8, 2025 | Hand Conditions, Limb Lengthening, Pediatric Developmental Disabilities, Rheumatology, Therapy Services

Scottish Rite for Children’s patient-centered care stems from its focus on helping patients navigate their conditions outside of the clinic. The Therapeutic Recreation department offers multiple specialized camps throughout the year, which are designed to teach patients how to live active and independent lives.

Camps bring together children with similar conditions in an environment that fosters friendships and lifelong memories through outdoor activities and games. The following camps are offered at Scottish Rite: 

  • Camp Joint Adventure: For patients between the ages of 7 to 15 who are diagnosed with arthrogryposis, multiple limb loss or various rheumatic conditions.
  • Camp TLC: For patients between the ages of 9 to 16 who are diagnosed with spina bifida.
  • Hand Camp: HD 1 is for patients between ages 5 to 9 who have upper limb differences. HD 1.5/2 is for patients between the ages of 10 to 17 with hand differences. 

What makes Scottish Rite camps special are not only the uniqueness each child brings but also each volunteer’s commitment to providing a “can do” environment. Camps are supervised by counselors, which includes Scottish Rite staff members and volunteers.

“A week at camp is not like any typical week as a nurse,” says Sheila Maldonado, R.N., who volunteers at Camp TLC. “On top of providing the fun for all our campers, counselors make sure they are healthy and safe during the entire experience. For nurses, it’s the best way to sharpen the skills we might not have used since school, while creating the most rewarding memories.”

All campers must be active patients of Scottish Rite. For staff members, many find that volunteering as a counselor is a unique way to interact with patients in a nonclinical setting.

“The best part about camp is seeing the connections made,” says R.N. Manager Alejandra “Alex” H. Medrano, M.S.N., R.N., who has volunteered for more than 20 years at Camps TLC and Joint Adventure.  “They get a chance to build peer support networks. They also become more comfortable with their care team during appointments.”

The camps offered by Scottish Rite serve its mission of giving children back their childhood, allowing them to experience the joy of summer camp with their peers. “My favorite part is how inclusive these camps are and watching kids just be kids, including all the smiles, laughs, friendships and fantastic activities,” says Karol Yeager, R.N. “Out of all the activities, I think either the Slip ‘N Slide® or the zip line was my favorite to watch. The sheer joy from these kids that possibly have never done these things before was priceless!”

Camp TLC is currently accepting applications for campers and medical volunteers (cabin nurses). If you are interested in volunteering, please view the Camp Volunteer application process for more information.

To learn more about the application process, camp dates and more for Camp Joint Adventure and Hand Camps, please view our Camps page here. 

The Power of Personalized Care for Bo’s Bright Future

The Power of Personalized Care for Bo’s Bright Future

by | Mar 25, 2025 | Clubfoot & Foot Disorders, Pediatric Developmental Disabilities

From the moment patients and their families walk through the doors of Scottish Rite for Children, they find more than just outstanding pediatric orthopedic treatment. They immediately enter a culture of care, just like 2-year-old Bo and his family did.

At 3-months-old, Bo and his family came to Scottish Rite for his diagnosis of sacral agenesis and clubfeet. Sacral agenesis, a rare type of spina bifida, is a condition which occurs when the lower spine around the tailbone, or sacrum, does not fully develop. This condition can affect a child’s legs, lower back, and digestive and urinary tract. He also has clubfeet, which means his feet were severely turned inward and pointed downward at birth.

Bo’s care team consists of multidisciplinary experts from Scottish Rite’s Spina Bifida Program. This team includes experts from Developmental Pediatrics, Neurosurgery, Urology, Orthopedics, Physical Therapy, and Orthotics & Prosthetics, among others to give Bo holistic care for his every individual need. 

For his clubfeet, Bo’s care is led by Megan E. Johnson, M.D. — medical director of Ambulatory Care, pediatric orthopedic surgeon and program director of the Dorothy & Bryant Edwards Fellowship in Pediatric Orthopedics and Scoliosis.

“One of my favorite things is to see how my son’s doctors and care team members treat him,” says Katherine, Bo’s mother. “They always remember who he is, and they even treat him like a celebrity. They never make us feel like he is another patient.”

Together, Bo’s care team collaborates to provide him with a wide variety of treatment. To correct his clubfeet, orthotists created custom ankle-foot orthoses, which are assistive devices used to stabilize the foot and ankle. This year, he received his first ever wheelchair, which was adjusted to allow him to mobilize more independently.

“Our overall experience is unlike anything I’ve ever experienced,” Katherine says. “Every single person at Scottish Rite is so amazing. You feel like you’re at home. You are somebody at Scottish Rite, and they truly show that they love my son.”

While Bo’s care journey is just beginning, he is on the right track. With his care team and family supporting him, Bo continues to make more improvements in navigating his conditions outside of the clinic. Now, his family shares that Bo’s favorite activities are wheeling around in his wheelchair and being the best big brother possible.

“For Bo, Scottish Rite for Children is a place where he can see children like him and be himself,” Katherine says. “For me, it means my son is getting the best care possible.”

Do you have a story? We want to hear it! Share your story with us.

Spina Bifida Won’t Slow Sophia Down!

Spina Bifida Won’t Slow Sophia Down!

by | Aug 16, 2024 | Pediatric Developmental Disabilities

“I am just like the other kids,” 11-year-old Sophia says. “I just walk and do some things differently!”

At 18 months old, Sophia was diagnosed with spina bifida. Spina bifida is a condition that occurs before birth when a child’s spinal cord is not properly formed. This condition affects other body systems, such as the bladder, bowel and mobility in Sophia’s case. “Hearing the diagnosis of spina bifida was like a gut punch,” Katherine, Sophia’s mom, said. “It was easy to feel alone and overwhelmed, but it doesn’t have to be like that.” They re-located to Dallas and discovered the resources and supportive care Scottish Rite for Children offered spina bifida patients. “After our first appointment here, I was in tears,” Katherine says. “Sophia and our family were finally getting the support we needed.”
                                                                               
Because of its complexity, spina bifida requires a collaborative care team to help each child’s individual needs. Since 2017, Sophia has experienced care from various experts in Physical and Occupational Therapy, Orthotics and Prosthetics, Urology and Neurosurgery. “I have nothing but praise for the staff here,” Katherine says. “They are always so helpful whether it was during appointments or returning phone calls.” Sophia doesn’t mind her longer appointments either. She is always looking forward to visiting her favorite Scottish Rite staff members, like physician Richard Adams M.D., or making time to have fun on the playground.
 
Sophia faces her condition with fearless determination. Before Sophia was born, there was a high possibility that she would be wheelchair-bound for her entire life. Now, Sophia is moving around with walking devices, learning new skills and adapting her condition to swimming, riding her hoverboard and cheerleading. “She has come a long way from where we started,” Katherine says. “It would be easy for her to settle, but she wants to feel like every other kid.” Since 2022, Sophia has attended Camp TLC. As a camper, she gets to explore new experiences and make friends with other children like her. It’s clear there is no obstacle that Sophia cannot overcome!

Thanks to the unwavering support from her care team and family, Sophia can navigate life with spina bifida confidently. Katherine urges other parents with similar challenges to ask plenty of questions and seek out connections. “I would be lost without the Facebook groups and the amazing parents we’ve met,” Katherine says. “Don’t isolate yourselves; this is a small but incredibly supportive community!”

Comprehensive Care With Every Step

Comprehensive Care With Every Step

by | May 1, 2024 | Pediatric Developmental Disabilities

Previously published in Rite Up, 2024 – Issue 1.

Three-year-old Marley, of Palmer, pulls up to her physical therapy appointment at Scottish Rite for Children in her self-propelled wheelchair, lovingly named Marley’s Moo. “Marley has never met a stranger,” says her mother, Christina. “Everyone becomes her friend, and her presence fills the room.”
 
When the family got the wheelchair, Christina decorated it like a cow to encourage Marley to use it. Now, she maneuvers easily, wherever she wants to go. When she is not in her wheelchair, she gets around by crawling, but in physical therapy, she is learning how to walk using a gait trainer — an assistive device similar to a walker.

Marley was born with myelomeningocele, a form of spina bifida in which a fluid-filled sac containing neural tissue protruded from her back because the neural tube in her spine did not close completely. When she was 2 days old, a surgeon closed her back, and at 2 months old, a specialist referred her to Scottish Rite for Children where she receives comprehensive care through the Spina Bifida clinic.
 
While spina bifida primarily affects the nervous system, it can also impact related body systems, such as bowel, bladder and mobility. Marley’s multidisciplinary team includes experts from Pediatric Developmental Disabilities, Orthopedics, Urology, and Physical and Occupational Therapy. “They see her from head to toe,” Christina says. “Scottish Rite has become our hub, and it’s convenient because they line up all of our appointments on one day.”

Spina bifida affects Marley’s mobility, causing developmental delay. She started crawling at age 2. Then, the family built parallel bars to help her learn to stand and walk. “She was doing great on that, but for some reason she did not want to be in her walker,” Christina says.

At Scottish Rite, physical therapist Meredith Porteous found creative ways to motivate Marley to use her gait trainer. She also recommended adjustments, providing armrest attachments to help keep Marley upright and more comfortable. “Meredith has been great with Marley,” Christina says. “She’s on her hands and knees right along with her, helping her. Marley has really come around and asks to be in her walker. It’s been a game changer.”

After moving forward in her gait trainer, Marley is learning how to turn. “Scottish Rite has been a guidepost for us every step of the way,” Christina says. “We’re really hopeful for Marley’s mobility journey. We’re ready to see her conquer the world.”

Read the full issue.

Botulinum Toxin: How Botox Injections Help Treat Children with Cerebral Palsy and other Neuromuscular conditions

Botulinum Toxin: How Botox Injections Help Treat Children with Cerebral Palsy and other Neuromuscular conditions

by | Sep 15, 2023 | Pediatric Developmental Disabilities

At Scottish Rite for Children, our experts in Neurology and Rehabilitation Medicine care for patients with cerebral palsy using a variety of treatment methods. Treating the symptoms of CP can take many forms, and one common treatment for spasticity, or abnormal muscle tightness and stiffness, is the use of botulinum toxin (BT) injections. Known under name brands like Botox or Dysport, pediatric physical medicine and rehabilitation physician Fabiola I. Reyes, M.D., shares what parents need to know about this treatment.
 
What are botulinum toxin injections?
Botulinum toxin type A is a substance produced by the bacteria Clostridium botulinum. While toxic when ingested orally, the substance can be purified and safely injected locally in muscle tissue to treat a variety of conditions, including spasticity. It can be formulated in different ways and comes manufactured under different brand names like other pharmaceutical drugs.
 
How long has it been around?
BT injections have been used for patients with cerebral palsy for about 25 years. It was approved by the Food and Drug Administration in 1989 for eye conditions and muscle spasms in the face but has since been studied and approved for use with several other neuromuscular disorders.
 
How does it work?
Spasticity can make moving difficult, cause pain, loss of sleep and interrupt daily living activities due to the involuntary muscle tightness. When injected, BT injections work by blocking the chemical signal between nerves and muscles that cause contracting and tightening of the muscles. This can help relax muscles in the area around the injection site, although the effects are not permanent.
 
Is it safe?
BT injections have been used to safely treat spasticity in patients with cerebral palsy for more than 25 years. BT injections have been studied extensively by doctors and researchers all around the world and is approved to treat a variety of conditions and is even used for cosmetic purposes to prevent wrinkles.
 
BT injections were approved to treat spasticity in children with cerebral palsy in 2019. The safety and efficacy of the treatment has been backed by studies and trials in children ages 2 to 17 years.
 
Why use it for treatment?
In patients with cerebral palsy, BT injections have been found to improve range of motion, gait pattern, joint positioning and stability while reducing pain in the muscles, spasticity and tension.
 
BT injections are easy to administer, and the procedure can be performed in an outpatient setting. When giving injections, the provider will identify the muscles that need to be targeted. Multiple injections may be required for larger muscles or muscle groups, but the actual injection procedure only takes a few minutes.
 
How often does it need to be done?
Typically, BT injections prevent muscle tension in the injected areas for about three months, after which the effects may begin to decrease. The length of efficacy will differ for each patient.
 
What are the side effects?
The side effects of BT injections are minimal. The most common side effects are temporary weakness and injection site pain, but these effects occur in less than 10 percent of patients.
 
Learn more about our care for children with cerebral palsy.