Spina Bifida and Congenital Spinal Anomalies Center | Our Approach

Spina bifida is a lifelong diagnosis, so your child needs a team that has expertise in every stage of development. With the long-term goal of helping your child lead an active and fulfilling life, our comprehensive treatment plans are customized to your child’s specific needs.

Our pioneering advancements and roadmap for treatment sets the standard for spina bifida centers around the world.

Highlights of our care approach include:

• Coordination of care: We are one of few centers in the world that offers complete coordination of care among all specialty areas.
• Groundbreaking surgeries: Our center has pioneered innovative surgeries, such as ETV/CPC, as an alternative to shunting, spinal cord detethering, neonatal spina bifida surgery, and robotic bladder augmentation.
• Advanced testing: Our uniquely advanced spina bifida tests provide clear and accurate details about your child’s condition. This includes our world-renowned Urodynamics Program, which uses advanced technology to provide a comprehensive understanding of bladder and nerve function.
• Prenatal care: We partner with the Fetal Care and Surgery Center to bring extraordinary care for expecting mothers and immediate surgical care for newborns in our world-class neonatal intensive care unit (NICU).
• Transition to adult care: Boston Children’s is the only spina bifida center in New England that provides transition care for adult spina bifida.

Your child’s care team may include:

• Neurosurgery: Our neurosurgeons often begin working with our patients from the first day of life, when they may perform closure of the opening in the spine to protect the spinal cord and prevent infection. Spina bifida can cause hydrocephalus (the buildup of spinal fluid in and around the brain). At Boston Children’s, we have pioneered minimally invasive surgical techniques to address hydrocephalus, including ETV/CPC, an alternative procedure to a shunt that greatly improves quality of life. Our neurosurgeons also monitor patients in our clinic and can address other neurological conditions including tethered spinal cord.
• Urology: Our urologist monitors and maintains your child’s bladder and kidney health. Children living with spina bifida often have neurogenic bladder because nerves that control bladder function are affected by spina bifida. Our urologists provide techniques and medications to help the bladder empty regularly. Additionally, our Urodynamics Program uses advanced technology to provide a comprehensive understanding of bladder and nerve function. We take a unique collaborative approach to care, with both a neurologist and urologist working together to monitor your child’s bladder function.
• Orthopedics: Children living with spina bifida are at risk for multiple orthopedic issues such as scoliosis, kyphosis, hip dislocation, joint deformities, clubfoot, or weak bones. Our orthopedic surgeon treats issues like these. Boston Orthotics and Prosthetics Clinics (formerly NOPCO Clinics) provides everything children may require, from special spinal supports to ankle-foot orthoses (AFOs). Boston Orthotics and Prosthetics is conveniently located on the Boston Children’s campus.
• Gastroenterology: Some children with spina bifida may have impaired bowel control. Our gastroenterologist is dedicated to maintaining and regulating digestion, while helping patients establish and successfully manage bowel regimens.
• Nephrology: Our nephrologist works closely with our urologists to help protect the kidneys from damage. A nephrologist will assess for and manage any complications related to kidney damage, such as high blood pressure, kidney stones, or chronic kidney disease.
• Endocrinology: Children with spina bifida are at higher risk for low bone density and fractures. An endocrinologist monitors your child’s bone health and can also assess and treat growth disorders. Children with hydrocephalus are also at an increased risk for precocious (early) puberty, which our endocrinologists can help manage.
• Complex care services: A complex care pediatrician helps identify patients’ comprehensive medical and developmental needs. Their recommendations guide the specialists in making coordinated treatment plans.
• Nurse practitioners: Having a child with spina bifida means navigating multiple diagnoses, prescriptions, and care plans. The pediatric nurse practitioners in the spina bifida clinic are dedicated to coordinating care for patients and their families.
• Neuropsychology: Due to changes in early brain development, spina bifida can also affect the way children learn and develop. Neuropsychologists assess how changes in brain development are related to changes in behavior and document how children learn. They identify changes in cognition (such as memory and learning, problem solving, and processing speed) and social-emotional functioning. They help recommend services that support stronger development across domains and help children reach their learning potential.
• Social work: Dealing with diagnoses and hospitalizations can be stressful. A social worker supports you and your child and assists you with coping, psychosocial issues, and identifying local resources.
• Dietetics and nutrition: A registered dietitian assesses your child’s nutritional intake and develops individual meal plans based on his or her needs. Our nutritionist provides assessments and guidance to help children with spina bifida related to healthy eating, weight management, feeding difficulties, and motility issues.
• Physical therapy: People with spina bifida can experience difficulty with movement and coordination. Our physical therapist helps optimize your child’s motor function by collaborating with our orthopedic surgeon, providing manual muscle tests and prescribing mobility devices. We also partner with the Gait Laboratory at Spaulding Rehabilitation to use state-of-the-art diagnostic technologies to evaluate your child’s mobility.