Spina Bifida Center | Patient Resources

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Contact the Spina Bifida and Spinal Cord Conditions Center

  • 617-355-8532
  • International: +1-617-355-5209
  • Locations

Prenatal Care for Spina Bifida

Thousands of pregnant women have been referred to Boston Children’s Hospital for testing, counseling, treatment and care when spina bifida is suspected or diagnosed. Our Advanced Fetal Care Center is one of just a handful of comprehensive fetal centers in the U.S.

Advanced technology

Although you may have had a routine ultrasound at your obstetrician's office, our pediatric radiologists and imaging experts use advanced ultrasound and MRI to produce detailed images of your unborn child. The results can confirm or rule out a spina bifida diagnosis and provide the greatest level of detail possible during a pregnancy.

In-depth counseling

Members of our spina bifida team will meet with you and your family to help you understand the full scope of your child’s condition, set appropriate expectations, and make important decisions about his or her care.

Treatment plan

With the test results in hand, our collaborative spina bifida team will meet with you to design a treatment plan that is customized to the needs of your child. This will likely include surgery with 24-48 hours of birth to close the skin defect and to protect the spinal cord.

Once you’ve delivered your baby, the clinicians at the Spina Bifida and Spinal Cord Conditions Center are ready to step in. We partner with best-in-class obstetricians and perinatologists at Brigham and Women’s Hospital and Beth Israel Deaconess Medical Center to coordinate delivery, postnatal care and follow-up care for your child. After you’ve delivered, your newborn baby will be transferred to the Neonatal Intensive Care Unit (NICU) at Boston Children’s, where you and your family can visit whenever you want.

We see newborns for outpatient follow-up care in our Spina Bifida and Spinal Cord Conditions Center at both our Boston and Waltham locations. We typically see patients within the first month of life for a comprehensive visit with all our specialists.

Transition care for spina bifida

As children with spina bifida grow into teens and young adults, they face unique challenges. The Spina Bifida and Spinal Cord Conditions Center helps address these unique needs by providing continuous care and support for patients and their families into adulthood.

From childhood to adolescence

Adolescence can be difficult for anyone, but for teens with spina bifida, the challenges can be even greater. Our complex-care specialists, as well as social workers, nurses and neuropsychologists, can help patients and their families navigate these transitional years. Unlike obvious physical and medical barriers, loneliness and depression can be invisible obstacles to a successful transition. We partner on various projects with the Spina Bifida Association of Greater New England (SBAGNE), which recently recognized us for our work with teens. These projects and events include conferences and weekend camps that cover issues such as self-esteem, nutrition, cognitive and sexual development, mobility and more. For more information about these and other events, please visit the SBAGNE website.

The transition to adulthood

It can be challenging for all young adults with medical conditions to successfully transition to adulthood and assume responsibility for their own medical care. Planning for a successful transition is a process that begins much earlier than adolescence. At the Spina Bifida and Spinal Cord Conditions Center, we help patients and families identify life goals and then work toward them. We utilize each patient’s strengths to support skill development over time, whether they are focused on transitioning to college and functional independence, or will need ongoing support throughout their lives.

After age 14, our neuropsychologist and social worker meet yearly with families to assess and discuss a patient’s ability to take charge of their own care. The first part of the transition process is to carefully assess the teen’s skills and to create an appropriate plan based on their strengths and weaknesses, considering the expected increase in independent functioning by age 18. The second part of this process focuses on preparing for the eventual transition to adult care facilities when medically appropriate. Our specialists help you and your teen or young adult navigate the many changes to consider, including discussions and learning around:

  • assuming responsibility for their health needs
  • selecting appropriate educational programs
  • evaluating job skills and possible vocational supports
  • advocating for services
  • building independent functioning and self-management skills
  • developing healthy relationships
  • helping families navigate the guardianship process

Helpful Links

Please note that neither Boston Children’s Hospital nor the Spina Bifida and Spinal Cord Center at Boston Children’s unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.

External Resources for Parents and Families

Resources for Teens

Resources for families living outside the U.S.

For patients and families outside the United States, Boston Children's International Health Services is a dedicated resource for patients and families from countries outside the United States.

Boston Children’s is so much more than a hospital—it’s a community of researchers, clinicians, administrators, support staff, innovators, teachers, patients and families, all working together to make the impossible possible. ”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital
300 Longwood Avenue, Boston, MA 02115
For Patients: 617-355-6000
For Referring Providers: 844-BCH-PEDS | 844-224-7337

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