Spina bifida (Myelodysplasia)

If you’ve learned that you’ll be having a child with spina bifida—or if your child has been diagnosed with spina bifida—we know that you and your family are dealing with a great deal of anxiety and uncertainty right now. It may comfort you to know that with excellent treatment and care, your child with spina bifida can have a good chance to become an active, productive person with a normal or near-normal life span.

At Children’s Hospital Boston, we’ll approach your child’s treatment with sensitivity and support—for your child and your whole family. It will be our constant goal to maximize your child’s functioning, strength and quality of life.

About spina bifida
Spina bifida is a complex birth defect that affects the development of the baby’s spinal cord, spine and developing brain. In utero, the baby’s spine fails to close in the first few months of its fetal life.

• Spina bifida is an incurable, life-long condition affecting the neuromuscular and neuroskeletal systems.
• The condition varies widely—with three distinct types ranging from mild to severe.
• As they grow, children with spina bifida may need braces or other assistance to walk, and children with a severe defect may need a wheelchair.
• Treatment focuses on preventing or minimizing deformities and maximizing your child’s capabilities at home and in the community.

In the most common forms, there’s an abnormal development of the back bones, spinal cord, surrounding nerves and/or the fluid-filled sac that surrounds the spinal cord. The abnormality can develop anywhere along the spine, and can cause a portion of the spinal cord and surrounding structures to develop outside, instead of inside, the baby’s body.

In surgery, doctors can repair the abnormal spinal opening. But the nerve damage is permanent, and if severe, can lead to varying degrees of lower limb paralysis. The higher on the spine the defect is, the more severe the nerve damage and resulting paralysis.

Scientists don’t know for sure what causes spina bifida, but they think that genetic, nutritional and environmental factors may all play a role. Researchers believe that a deficiency of folic acid (a B vitamin) in the mother may be a strong contributor. And having one child with spina bifida increases the chance of having a second child with the same condition.

How Children’s Hospital Boston approaches spina bifida

You can have peace of mind knowing that our Spina Bifida (Myelodysplasia) Program is one of America’s oldest and largest comprehensive, multidisciplinary centers for the care of children with spina bifida (myelodysplasia). The national Spina Bifida Association has designated our Program an “Outstanding Service Provider.”

As innovators in treating hydrocephalus in newborns with spina bifida, Children’s is the only hospital in the United States using a new technique—endoscopic third ventriculostomy combined with choroid plexus cauterization—that avoids the need for shunt implantation and lifelong shunt dependence in 75 percent of those requiring treatment for hydrocephalus.

The experts in the Spina Bifida Program have successfully treated thousands of children with neuroskeletal and neuromuscular problems—some of which are so rare that few pediatric doctors have ever even come across them. As a result, we can offer your child the world’s most advanced diagnosis, treatment and care.

Our team shares a long-standing dedication to, and expertise in, this complex condition. We take a multidisciplinary approach to enhancing a child’s quality of life—and promoting independent living—for children with spina bifida. And we care for many of our young patients into adulthood.

Spina bifida: Reviewed by Lawrence Karlin, MD
© Children’s Hospital Boston, 2010

Neither Children’s Hospital Boston nor the Spina Bifida Program at Children’s unreservedly endorses the information found at other sites mentioned on our Web pages.

Children's Dr. Warf receives 2011 Health Care Achievement Award from national Spina Bifida Association

Congratulations to Benjamin Warf, MD, director of Neonatal and Congenital Anomaly Neurosurgery at Children's. Dr. Warf will receive the Spina Bifida Association’s Health Care Achievement Award at the association's 2011 national conference, "Today’s Magic, Tomorrow’s Vision," held June 26-29 in Anaheim, California. 
 

 

The award encourages and rewards innovation in the development of surgical techniques, medical technologies or health care practices that substantially improve the quality of life for persons with spina bifida. The annual recipient is the person, corporation or institution most clearly exemplifying the goals of the Spina Bifida Association. 

• Learn more about the conference and award.
• Learn more about Dr. Warf and his work.