Spina bifida – a malformation involving the initial formation of the brain and spinal cord during the first four weeks after conception, that leaves a portion of the brain or spinal cord still attached to the skin of the head or spine and exposed on the back of the infant.
At Penn State Children’s Hospital, we offer Spina Bifida patients and their families a robust, multidisciplinary, highly experienced team with outstanding clinical judgment.
Care at Children's
At the Children’s Hospital, we are known for our commitment to providing care for Spina Bifida patients throughout their lifespan - from diagnosis in the womb, throughout childhood, and into adulthood with a seamless transition to our adult clinic.
We offer prenatal consultation for parents so they know what to expect during pregnancy and after the birth of their child. Our program welcomes referrals from pediatricians and primary care physicians as well as self-referrals.
Our Spina Bifida program is one of only 20 in the country that has been selected to participate in the National Spina Bifida Registry Demonstration Project, funded by the Centers for Disease Control and Prevention, to track long-term outcomes for children and adults with Spina Bifida and to perform research into these disorders. This is just one example of our outstanding reputation nationwide and demonstrates our commitment to Spina Bifida patients and to continued improvement in the care and treatments they receive.
If Spina Bifida is detected prenatally, parents’ first step should be to make an appointment with us for a prenatal consultation. We can evaluate the baby in the womb to determine if fetal surgery is an option and will outline a plan of care from that moment through the first few months of the baby’s life.
For children already diagnosed with Spina Bifida, their initial evaluation with us will include our full team including a neurosurgeon, orthopaedist, urologist, and others. We will perform a comprehensive assessment and tailor a treatment plan to each child’s individual needs.
While other institutions may recommend surgery in every case of Spina Bifida, we use a stepwise algorithm along with exceptional clinical judgment and our many years of experience to help us determine an appropriate treatment plan for each patient.
We often start with non-operative measures, such as physical or occupational therapy or therapeutic massage. We focus on the best management of each child’s condition and symptoms, taking a holistic approach to their care.
When surgery is necessary, we offer the latest minimally invasive techniques for children in the first 48 hours of life to close the defect in the spinal cord, as well as expertise in subsequent surgeries to correct deformities or place or repair shunts.
Spina Bifida care involves multidisciplinary care from many departments, including:
- Physical therapy
- Occupational therapy
- Social work
- Nurse Care Coordination
Our pediatric clinic is located at:
Penn State Pediatric Bone and Joint Institute
30 Hope Drive
Suite 2200 | Entrance B
Hershey, PA 17033
Our adult clinic is located at:
Penn State Health Neurosurgery
30 Hope Drive
Suite 1200 | Entrance B
Hershey, PA 17033
If a patient is experiencing an acute issue, you may be able to see a Spina Bifida specialist in his or her office so the issue can be addressed more quickly. We will help you arrange this.
Groups, Classes & Support
Support groups provide an opportunity to share your feelings and connect with other parents and caregivers who are experiencing similar struggles.
- Spina Bifida Association
- Living with Spina Bifida in Central PA (Facebook group)
- Parent to Parent of Pennsylvania - Linking families of children and adults with disabilities and special needs.
Learn more about pediatric support groups offered at Penn State Children’s Hospital.
Research & Clinical Trials
Research into Spina Bifida at Penn State Children’s Hospital centers around one main initiative.
Our program is proud to be one of 20 programs nationwide chosen for the National Spina Bifida Registry Demonstration Project. This project, funded by the Centers for Disease Control and Prevention, tracks long-term outcomes for children and adults with spina bifida and performs research into these disorders.
Leaders in our program, neurosurgeons Mark Dias, MD and Elias B. Rizk, MD, are the principal investigators on this three-year grant, which is coordinated through the Penn State Neuroscience Institute.
The Children’s Hospital is the second largest contributor of data to the registry. We support this method of research to enable multi-institutional collaboration that will lead to improved best practices and treatments for children with Spina Bifida.
Symptoms, Diagnosis & OutlookSpina bifida is a type of birth defect called a neural tube defect. It occurs when the bones of the spine (vertebrae) don't form properly around part of the baby's spinal cord. Spina bifida can be mild or severe.
Your child's symptoms will depend on how severe the defect is. Most children with a mild form of spina bifida, do not have any problems from it.
In most cases, children with meningocele don't have any symptoms.
Children with most severe forms of Spina Bifida, often have spine and brain issues that cause serious problems. These may have:
- Little or no feeling in their legs, feet, or arms, so they may not be able to move those parts of the body.
- Bladder or bowel problems, such as leaking urine or having a hard time passing stools.
- Fluid buildup in the brain (hydrocephalus). Even when it is treated, this may cause seizures, learning problems, or vision problems.
- A curve in their spine, such as scoliosis.