Patient Resources | Overview
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 Maternal Fetal Care Center is one of just a handful of comprehensive fetal centers in the U.S.
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.
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.
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 to 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.
Please note that neither Boston Children’s Hospital nor the Spina Bifida and Spinal Cord Conditions 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
- Camp MITIOG – A Camp for Children with Spina Bifida
- International Federation for Spina Bifida and Hydrocephalus
- Society for Research into Hydrocephalus and Spina Bifida
- Spina Bifida Association
- Spina Bifida Association of New England
- Right Under My Nose: A Book for Children with Spina Bifida
Resources for families living outside the U.S.
For patients and families outside the United States, Boston Children's Global Services is a dedicated resource for patients and families from countries outside the United States. The office facilitates the medical review of patient records and appointment scheduling and also provides assistance with customs and immigration, transportation, and hotel and housing accommodations.