Spina Bifida Center | Transition Care for Adult Spina Bifida

Our Spina Bifida Center is the only center in New England and one of only a few in the country that treats adults with spina bifida. We are committed to providing comprehensive, continuous care of our patients into adulthood. We also specialize in transitional care counseling for patients and their families.

Spina Bifida: From Childhood to Adolescence

Transitioning from childhood into young adulthood is a delicate time for any teen, but for teens with spina bifida, the challenges can be even greater.

Our complex care specialists, as well as other team members including social workers, therapists, nurses and neuropsychologists, can help patients and their families navigate these transitional years. If independent living is the goal, we encourage teens to develop decision-making skills that relate to daily activities like grooming, cooking and housekeeping to more complex skills like managing finances.

Unlike physical and medical barriers, loneliness and depression are invisible barriers to a successful transition. We focus on the self-esteem needs of adolescents through two new projects, in partnership with the Spina Bifida Association of Greater New England (SBAGNE). The association recently recognized us for our work with teens.

Bling Event

Better Living ‘N Girls (BLING) Camp

A weekend for teen girls ages 12-17 with a program built around developing self-confidence, sharing experiences and embracing abilities.

Boys, Esteem, Success and Training (BEST)

A weekend for teen boys ages 12-17 with athletic activities and programs designed to build self-confidence and share experiences.

Held at locations outside the hospital, these peer networks engage children in games and activities to promote healthy eating and fitness, balance and relaxation, social awareness—and fun.

For more information about these and other events, please visit the SPAGNE website.

The Transition to Adulthood for Patients with Spina Bifida

As experts in caring for patients with spina bifida as they mature, we understand that a child’s needs change as they grow. Patients with spina bifida may require spinal detethering procedures and urodynamic testing into young adulthood. Over time, their needs expand to include independence planning. 

Our specialists help patients and their families navigate the many changes they must consider, including:

•   Learning to take care of their health needs
•   Going to school  
•   Working or volunteering
•   Finding and using transportation
•   Living outside their parents’ home
•   Developing healthy relationships
•   Independence or guardianship planning

We help young adults with spina bifida learn to manage much of their own care, within their abilities, including finding new doctors that care for adults, obtaining medical insurance if they are no longer covered under their parents’ health plan, and ordering or reordering medications and supplies.