This October is Spina Bifida Awareness month. Spina Bifida is a birth defect affecting the neural tube, where the spinal cord and spinal column do not form properly, therefore making it a type of spinal cord injury. This can result in mobility issues, bowel and bladder dysfunction, seizures, and learning disabilities to name a few.
For this Ask a Clinician Series, we have Dr. Philippines Cabahug giving advice to parents who have had a child suffer from a spinal cord injury, which could very well include spina bifida. For those of us practicing in pediatrics or pediatric rehabilitation, this is a difficult but important conversation to have with parents. Read below for some pearls of wisdom that we can incorporate into how we care for our spina bifida families.
"Learn as much as you can about your child’s condition so you can be an effective advocate for your child’s care. As your child grows older, teach and empower your child to advocate for himself/herself."
- Dr. Pines Cabahug
What is your advice for parents who have a child that suffered a spinal cord injury?
The spinal cord carries important information between the brain and the rest of the body regarding movement, sensation, reflexes, and organ function. Spinal cord injury (SCI) can result in impairments in strength and sensation (e.g. touch, vibration, proprioception) and affect different body systems below the level of the injury. How much function that is affected depends on where the injury occurs in the cord and how severe the injury is. Injury to the cervical spine (neck) results in tetraplegia while injury to the thoracic and lumbar spine (upper and lower back) results in paraplegia.
Changes in sensation below the level of the injury may include partial or total loss of sensation or the presence of abnormal sensation (pain, numbness, tingling). Strength and muscle control changes below the level of the injury can include total loss of movement and/or muscle weakness. SCI can affect the autonomic nervous system, which is responsible for different bodily functions. This can result in changes in bowel and bladder function, blood pressure and heart rate control, respiratory function, temperature regulation (e.g. sweating, shivering) and sexual function.
Children living with SCI are thus at risk for developing associated secondary conditions and complications. In addition to bowel, bladder, cardiovascular and respiratory dysfunction, they can develop metabolic problems (low bone mineral density and increased risk for fractures), musculoskeletal complications (scoliosis, hip problems), neuropathic pain, spasticity, and pressure ulcers.
The medical and rehabilitation care of a child with SCI addresses the prevention of these secondary complications, maintenance of good health, and promote age-appropriate functional independence.
Here are some points for parents to consider:
Rehabilitation management and equipment needs will change as the child grows. Goals will change with the physical, physiologic, psychologic, and cognitive changes that occurs from infancy through childhood to adolescence, and eventual transition to adulthood. For example, an infant or toddler with paraplegia may crawl or use a stander or wheeled stroller for mobility as he learns to explore his environment. He may use a wheelchair at school. Wheelchairs will need to be replaced as a child grows. A teenager may need access to motor vehicles as they negotiate school, social life and transition to adulthood.
Initial therapy interventions typically focus on age-appropriate activities of daily living, and establishment of bowel, bladder and skin (prevention of pressure injury) programs. Bowel and bladder training can begin in preschool years (when children are normally expected to be toilet trained). Social services, psychologic and vocational counseling (as appropriate) should be included.
Children with SCI and spina bifida are at increased risk for developing secondary health conditions. General pediatric and wellness care is thus an important part of health maintenance and prevention of secondary complications. Immunizations should be up to date. Due to paralysis, they are at risk for obesity, cardiovascular disease, and metabolic syndrome. Nutrition monitoring is important to avoid obesity and malnutrition. Skeletal problems, such as scoliosis, hip dislocation/ subluxation, can develop following SCI. Screening for these conditions is important. These children are also at risk for developing latex allergy (due to initial and long duration of exposure to latex at a young age). Preventive measures include minimizing latex exposure, having a medical alert bracelet, and ready access to an EpiPen for emergency use.
Attending school is important. It allows the child to (re)establish peer interaction, friendships and helps normalize child and family life after SCI. Your rehabilitation team will help in the development of an individualized education program (IEP) or a 504 plan regarding your child’s anticipated educational, therapeutic and health care needs during the school day.
Play, leisure, and recreation should be incorporated in therapy. Consider exploring participation in adaptive sports activities.
In general, children and youth with SCI are resilient and adapt well to their injury. Studies have shown that levels of depression and anxiety are similar to their non-injured peers. These may fluctuate over time and with changes in physical functioning, appearance, and relationship issues. Support groups, peer mentors and counseling may be helpful.
Learn as much as you can about your child’s condition so you can be an effective advocate for your child. . In the beginning, there is a lot of information overload. Do not be afraid to ask questions to your health providers. In addition to your rehabilitation team (doctors, nurses, PTs/OTs/speech therapists, social workers, teachers), patient support groups and non-profit organizations can provide help in identifying other medical and therapy resources, tips on navigating challenges regarding school, insurance etc.
Caregiver stress is real. Be kind to yourself. Please allow yourself the time and grace to take a breath and see to your needs.
Children living with SCI are resilient, and with guidance and support, they can grow up to be resilient and independent adults. As they grow older, they should be encouraged to take a more active role and responsibility in age-appropriate activities (for example, doing catheterization program, adhering to scheduled pressure reliefs while in the wheelchair, or making sure they turn in schoolwork in time). If the level of injury prevents this, the child should be educated about proper bowel/bladder care, pressure relief so that they can confidently direct their care. Set age-appropriate expectations and entrust them with responsibility as they transition from childhood to adolescence and into adulthood.
Become an effective advocate for your child’s medical and rehabilitation care. You can then teach and empower your child to advocate for himself.
Get to know Dr. Philippines Cabahug
Philippines Cabahug, MD, FAAPMR is a physiatrist and spinal cord injury specialist practicing at the International Center for Spinal Cord Injury, Kennedy Krieger Institute. She is also the Spinal Cord Injury Medicine Fellowship Director and Assistant Professor at the Department of Physical Medicine and Rehabilitation, Johns Hopkins School of Medicine.
Dr. Cabahug attended medical school at St. Lukes William H. Quasha College of Medicine and did both her residency and fellowship at Johns Hopkins School of medicine.
Her favorite Filipino food is nilagang baka, and watch out! She's a punching bag DIVA!
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