Spina Bifida

At Penn State Children’s Hospital, we offer Spina Bifida patients and their families a robust, multidisciplinary, highly experienced team with outstanding clinical judgment.

Make an appointment

717-531-7311

Overview

At Penn State 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.

In 2020, our Spina Bifida program was also designated as an official Spina Bifida Association Clinic Care Partner.

We have been identified and recognized for providing services that positively impact the health of people with Spina Bifida with only 30 other clinics in the nation.

Contact us

Nurse Coordinator:
Jolene Keller, BSN, RN
717-531-7522

Social Worker:
Denise Newhard, MSW
717-531-7111

Spina bifida is a complex condition that requires lifelong, coordinated care from multiple medical and surgical specialties.

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.

 

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.

Our approach to care at the Penn State Health is individualized and patient-centric. We see patients with scheduled appointments on a regular basis but also offer immediate availability for an acute issue.

Groups, Classes & Support

Support groups provide an opportunity to share your feelings and connect with other parents and caregivers who are experiencing similar struggles.

Care Team

Penn State Pediatric Bone and Joint Institute
30 Hope Drive
Suite 2200 | Entrance B
Hershey, PA 17033

Phone: 717-531-7311

Our adult clinic is located at:

Penn State Health Neurosurgery
30 Hope Drive
Suite 1200 | Entrance B
Hershey, PA 17033

Phone: 717-531-7311

Join us in welcoming 2-year-old Stella from Reading into our Children's Miracle Network family, who received treatment at Penn State Children's Hospital for several conditions including Spina bifida and hydrocephalus, a build-up of fluid on the brain.

Stella’s miracle journey began when she was born in 2017. Her mom, Sophie, had a normal pregnancy, but immediately after Stella was born at a hospital in Reading, a nurse spotted a defect on Stella’s back – a symptom of Spina bifida, which occurs when a baby’s spinal cord does not develop or close properly in the womb.

She was transported by Life Lion pediatric ambulance to Penn State Children’s Hospital for surgery. Soon after she went home, she was readmitted to place a shunt in her brain to drain fluid.

While shunts save lives, they can become infected or clogged, and little Stella has had more than ten surgeries in just her first two years of life. She also needed a laminectomy (spinal surgery) to remove additional fluid and scar tissue.

CMN Hershey has helped Stella throughout her many hospitalizations. Child Life used toys to distract Stella from uncomfortable procedures, and she LOVES facility dog Becky. She has also enjoyed many music therapy sessions and benefited from equipment in the Neonatal Intensive Care Unit. In addition, CMN funded the pediatric ambulance that transported Stella and an isolette she needed in the Life Lion helicopter.

Stella is currently a patient at the Penn State Children’s Hospital feeding clinic to learn to eat more foods. Funnily enough, her favorite food is meat! She also loves coloring, swimming and doting on her new baby brother, Joey.

Meet more Miracle Children at CMNHershey.org.


When I was born, the doctors told my parents that I would never be able to walk and would have a learning disability. Luckily, I was able to walk with crutches and KAFOS. I also graduated from Upper Dauphin Area High School as the salutatorian and magna cum laude from Marywood University. In spite of having Spina Bifida, I’ve been able to do a lot of amazing things. I did therapeutic horseback riding through the Capital Area Therapeutic Riding Association for 15 years. I was involved in competitive marching band from seventh through twelfth grade.

I also learned to do a lot of fun sports through Camp S.T.A.R., a camp for kids with disabilities, which was run by many of the wonderful therapists at Penn State Children’s Hospital. I learned archery, how to kayak and how to scuba dive, things I never would have had the opportunity to do had I not gone there. I also am a licensed driver. I have my own modified vehicle with hand controls. I went through the driver training program at Penn State Health Milton S. Hershey Medical Center to learn how to do this. Overall, I’ve been very lucky. My journey with spina bifida hasn’t always been easy, but I've always persevered.


My name is Mark. I was born in Frankfurt, Germany, and moved to Pennsylvania when my father retired from the Army. I am L3-L5 myelomeningocele and rely on forearm crutches and HKFOs for mobility. During my public education, I was involved in many activities, including concert band, marching band and Odyssey of the Mind, a program that promotes problem-solving through creative thinking. I was also active in Boy Scouts, earning the rank of Eagle Scout and the Vigil Honor in the Order of the Arrow.

After graduating from high school in 1996, I earned a Bachelor of Science degree in computer information technology at the Pennsylvania College of Technology. I then began my career at the commonwealth of Pennsylvania where I have held various IT positions, from technical support to my current position as a project manager. I obtained my driver’s license in 2006, which opened up a whole new world of independence to me. In my free time, I enjoy camping, fishing and woodworking. I also am a “professional amateur” photographer and a licensed amateur radio operator. Despite the physical challenges I have faced due to spina bifida, I have not let that hinder me and try to live life as best I can. I will not accept no for an answer.


My daughter Kiersten is 11 years old and was born with spina bifida. She spent her first 7 1/2 weeks in the NICU and had four surgeries while there. She came home with a feeding tube but defied the odds by passing her swallow study just two days later and was able to get it removed.

When she was 9, Kiersten had MACE and Mitrofanoff surgery. Those were a godsend and gave her so much independence! Her most recent surgery was MAGEC growing rods, which helped her scoliosis go from 105 degrees to 53 degrees. Kiersten attended Camp Spifida for the first time last year and is looking forward to going back next year. We can't wait to see what else the world has in store for her!