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.
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.
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.
Orthopedic Surgery, OrthopedicsView Profile
