Introduction:
This specialty clinic provides children with myelomeningocele, spinal cord injury, transverse myelitis and other conditions of the spine with ongoing management and rehabilitation intervention. Our aim is to facilitate growth and development and enhance maximum functional independence.

Spinal defects clinic is a multidisciplinary clinic for the evaluation of children with spinal cord anomalies. Our team works to  provide recommendations for home programs, equipment needs, family education, outpatient therapies, and school-based educational services.

We value a team approach to patient care. Our specialists work together to provide comprehensive, innovative treatments tailored to each patient’s and family’s needs. Moreover, we offer transition-planning and health-care services for teens and adults who have spina conditions, demonstrating our commitment to lifelong care.

Our Team Approach
Spinal defects encompass several conditions involving the nervous, urinary, muscular and skeletal systems. The effects of these conditions are different for each person, depending on how much of the spinal cord is damaged. That’s why we offer a full range of services to help our patients live full, more productive lives.

Rady Children’s Hospital’s Spinal Defects team brings together a caring team of professionals from a wide variety of disciplines. We work together to offer comprehensive care for every patient. We use a collaborative approach that places families at the center of the care team. Our specialists often build long-term relationships with patients, focusing on their physical, mental and emotional health. We believe that our approach ensures the best possible outcomes for our patients.

Team Members
This clinic is generally staffed by specialists including:

• Physiatrist/Physical Medicine and Rehabilitation Physician: Pediatric rehabilitation medicine physicians develop treatment plans to promote mobility and independence. They often collaborate with therapists to develop rehabilitation programs for patients.
   
• Nursing: Our nurses collaborate with physicians before, during and after surgery. Our nurses also provide patient care and educate families during inpatient stays and outpatient clinic appointments.
   
• Orthopedics: Orthopedic surgeons monitor how bones, muscles and joints develop in children who have spina bifida. Surgeons also evaluate the need for bracing and surgery.
   
• Urology: Urologists use medical and surgical techniques to improve bladder, bowel and kidney function in patients who have spina bifida.
   
• Neurosurgery: In addition to performing initial repairs of spinal defects, neurosurgeons treat hydrocephalus and tethered spinal cords.
   
• Social Work: Our social workers interview patients and families to determine their needs. We help families find community resources for needed services and provide educational and emotional support to patients and families.
   
• Physical Therapy: Physical therapists recommend treatments that improve gross-motor skills and help prevent problems, such as muscle contractures and loss of strength. By monitoring range of motion, strength and abilities, physical therapists help patients improve their independence and mobility.
   
• Occupational Therapy: Occupational therapists consult on and recommend treatment for issues in the areas of fine motor, activities of daily living (ADLs,) sensory integration, and feeding.
   
• CCS Liaison: California Children Services Occupational or Physical Therapist acts as a link between the Spinal Defects team, CCS, and the patient to facilitate referrals, and coordinate patient care.
   
• The Spinal Defects team also works closely with other services at Rady Children's including Genetics, Neurology, Pulmonary, Cardiology, Psychology and Nutrition.

Condition:
Spina bifida occurs when the spinal cord, surrounding nerves and/or spinal column fail to develop normally during the first 28 days of gestation. The condition can affect the nervous, urinary, muscular and skeletal systems—often causing bowel and bladder complications and paralysis below the spinal defect.

Common Types of Spina Bifida:
There are many types of spina bifida. The most common are:

Myelomeningocele:
In myelomeningocele, a sac containing an abnormally formed spinal cord protrudes from an opening in a baby’s back. The nerves at and below the defect are damaged. The higher the defect occurs on the spine, the greater the number of nerves that are affected. Babies need surgery shortly after birth to repair the affected area of the back.

Meningocele:
In meningocele, a baby is born with a sac protruding from an opening in the back. Unlike with Myelomeningocele, the sac doesn’t contain the spinal cord. Most often, few nerves are affected. Babies need surgery shortly after birth to repair the affected area of the back.

Spina Bifida Occulta:
In spina bifida occulta, the bones around a baby’s spinal cord fail to develop normally. The nerves of the spinal cord usually are normal, as is the skin on the back. Sometimes, however, there will be a dimple, hair patch or red discoloration on the skin at the point of the defect. Babies rarely need surgery shortly after birth to repair the defect.

Effects of Spina Bifida:
Depending on the severity and location of the defect, people who have spina bifida can experience a wide range of medical complications, including:

• Allergic reactions caused by prolonged exposure to latex
• Bladder, bowel and kidney problems
• Eye problems
• Fractures
• Hydrocephalus (excess fluid on the brain)
• Learning disorders
• Seizures
• Skin problems
• Tethered spinal cord
• Weight gain
• Mobility Issues
• Tethered spinal cord
• Weight gain

  
Additional Resources:

Spina Bifida Association of America
800-621-3141
www.sbaa.org

The Hydrocephalus Association
888-598-3789
www.hydroassoc.org

Handcycles
www.roadrunnersports.com
click on Athletes Helping Athletes (left hand side)
Read about AHS, then click on “Apply for Grant” and
Follow the instructions for the application process

San Diego Adaptive Sports Foundation
P.O. Box 153792
San Diego, CA 92173
(619)336-1806 Office
(619)336-9809 Fax
www.sdasf.org

Wheelchair Sports North County
Contact Doris at (858)513-0302
Doris_wcs_nc@hotmail.com

Beach Wheelchairs-State of California
www.coastal.ca.gov/access/beach-wheelchairs.html

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