Spina Bifida Clinic
A Holistic Approach to Spina Bifida Care
Spina bifida is a neural tube defect that occurs usually occurs during the first month of pregnancy when the neural tube, which includes the brain and spine of the embryo, does not properly close. This leads to a complex condition that, from birth, presents challenges in multiple areas. The severity of the symptoms ranges from mild to severe depending on the size and location of the opening of the spine.
The three most common types of spina bifida are:
- Spina bifida occulta (mildest, usually no disabilities)
- Meningocele (minor disabilities)
- Myelomeningocele (most serious, moderate to severe disabilities)
Experts agree that multidisciplinary care is the gold standard of medical and rehabilitative care for individuals with spina bifida. We propose a new conceptual model for spina bifida services that integrates issues and perspectives from multiple arenas including medical, habilitative, and social domains. The Children's Hospital New Orleans model incorporates the latest World Health Organization (WHO) framework for conceptualizing function and disability, but also the dimensions of activity and participation.
Building relationships with patients and families
Evaluation and treatment for patients with spina bifida and secondary conditions is achieved through a working partnership between interdisciplinary team members, the patient and family, and the patient’s primary care provider. Additionally, treatment plans are shared with the school and community care providers to optimize re-integration.
Secondary conditions we treat include:
- Seizures
- Coordination problems
- Weakness
- Learning disorders
- Bowel and bladder problems
- Chronic pressure wounds
- Orthopedic problems
Collaboration with Physical Medicine and Rehabilitation
Pediatric physiatrists (physical medicine and rehabilitation providers) specialize in the rehabilitation care and medical management of children with congenital spinal disorders like spina bifida. We understand how cognitive and physical disabilities affect growth and development and incorporate this knowledge to work with patients and their families to develop and direct individualized treatment programs. The program’s main goals are to restore or improve function and maximize quality of life to facilitate school and community re-integration.
Collaboration with Gastroenterology
Kids with spina bifida frequently have constipation caused by a neurogenic bowel, or a loss of normal bowel function. This can result from several issues including the colon’s failure to push stool out, a lack of sensation in the rectum and anus, and difficulty holding the stool in the anus. Constipation can affect everyday life and activities like school but can also lead to urinary tract infections and shunt malfunctions. In our clinic, we have a gastroenterologist to help with the treatment of constipation. We discuss treatment options that work best for the child and the family. Some of these options include stool softeners and oral stimulants but frequently, rectal therapy with suppositories or enemas are required. Our goal is to treat constipation to ensure bowel continence, thus improving the child’s quality of life. Learn more about bowel management here.
Collaboration with Urology
The Urology Department at Children’s Hospital New Orleans is a large part of the multidisciplinary spina bifida clinic. Urologic care of children with spina bifida and related disorders is an area of interest for our group. The complex neural pathways that govern normal bladder function are affected to various degrees in children with spina bifida and the amount of bladder dysfunction will vary. The primary goal in caring for these patients is to ensure that bladder dysfunction does not cause damage to the kidneys.
An annual kidney ultrasound is recommended to help detect any potentially negative changes in kidney health. Detailed assessment of bladder function is performed through specialized testing called urodynamics which is important to perform at regular intervals throughout childhood. Managing the bladder may require the use of intermittent bladder catheterization and/or bladder relaxing medications.
As a child ages, social continence becomes of great importance and additional medical therapies and surgical procedures may be needed to achieve this goal. We use both conventional and emerging technologies such as robotic surgery to meet the needs of this special group of patients. Urologic health in individuals with spina bifida and related conditions is a lifetime commitment between patients, their families, and their physicians and we look forward to serving your needs.
Collaboration with Orthopedics
Orthopedic abnormalities in individuals with spina bifida are caused by unbalanced muscle action around joints, paralysis, and decreased sensation in the lower extremities. These problems can be acute or chronic in nature. The main goal of orthopedic care of a patient with spina bifida is to correct deformities that may interfere with function. Additionally, the orthopedic surgeon must monitor spinal balance and deformity. Because acute changes in orthopedic problems can be caused by acute neurologic events such as tethered cord syndrome, the orthopedic examination also assists in monitoring the neurologic status of the patient.
Collaboration with Neurosurgery
Pediatric neurosurgeons are fellowship-trained subspecialists who treat surgical disorders of the brain, spine, and peripheral nerves. The Children’s Hospital New Orleans neurosurgeons are board certified by the American Board of Pediatric Neurosurgeons and has the largest combined years of pediatric neurosurgical experience in the state. Each surgeon’s practice is dedicated solely to the care of children with a commitment to treating patients with spina bifida. The neurosurgical operating rooms are equipped to provide advanced techniques such as neuroendoscopy, microneurosurgery, and computerized frameless stereotactic image guidance.
The neurosurgeon’s role may begin as early as the prenatal period and continues as the child grows. It includes the management of hydrocephalus, shunt malfunction, tethered cord, syringomyelia and Chiari malformations. During a visit to the multispecialty spina bifida clinic, the neurosurgeon will conduct a focused neurological evaluation on the child, address relevant concerns, order radiographic studies when indicated, and review surgical options when necessary. Working closely with families and other specialties, a comprehensive team approach is emphasized in helping each child achieve and maintain their full potential.
Collaboration with Neuropsychology
Pediatric neuropsychologists specialize in understanding how the developing brain affects the cognitive, social, emotional, and behavioral functioning of children.
Neuropsychological evaluations assess:
- Intellectual abilities
- Academic skills
- Executive functions (organization, planning, flexibility, etc.)
- Attention
- Memory
- Language
- Visual-spatial skills
- Motor coordination
- Social, emotional, and behavioral functioning
Children and adolescents with spina bifida may exhibit weaknesses in mathematics, visual-motor coordination, attention, impulse control, and executive functions. If needed, our neuropsychologists will complete an evaluation and provide recommendations to optimize treatment and educational goals.
Equipment/ Wheelchair Needs
Physical Therapy is consulted for seating, mobility, and chronic wound care when needed.
