Spina Bifida - Myelodysplasia

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Boston Children's Hospital is home to one of the world's largest and oldest interdisciplinary care centers for children with spina bifida, or myelodysplasia. A collaboration between our Department of Neurosurgery, Department of Orthopedic Surgery and Department of Urology, our Spina Bifida Program uses a combination of advanced diagnostics, innovative medical and surgical therapies and collaborations with specialists in all related disciplines to help our patients lead fulfilling and happy lives.

If your child has been diagnosed with spina bifida, it's important to work with experts who:  

  • understand that children with spina bifida need treatment and support in a variety of capacities, from improving their musculoskeletal functioning to helping them  live as independently as possible

  • recognize that children with spina bifida face a broad spectrum of orthopedic symptoms that need specialized management

  • have extensive expertise treating other related conditions, such as hydrocephalus, incontinence issues and tethered spinal cord

  • never lose sight of the fact that your child is an individual—not just a recipient of medical care

Above all, we are committed to designing a treatment plan that fits the individual needs and circumstances of your child, and to providing emotional and educational support for your entire family.

Our expertise

Boston Children's Hospital's Spina Bifida (Myelodysplasia) Program offers extensive diagnostic, treatment, support and follow-up services for children with spina bifida, also known as myelodysplasia and their families. Our orthopedic surgeons, urologists, neurosurgeons, neurologists, nurses, orthopedists and physical and occupational therapists have an intricate understanding of the many symptoms and complications that can affect children with spina bifida.

From our laboratories—where our researchers are working daily to reach new insights into the disease—to our renowned Augmentative Communication Program, Boston Children's Hospital is committed to providing exceptional care for patients and families living with spina bifida.

At Children's Spina Bifida Program, our specialists:

  • perform prenatal ultrasound imaging to confirm or eliminate a possible diagnosis of spina bifida

  • begin every child's treatment with a comprehensive evaluation that involves you and your family

  • design and prescribe corrective casts and other orthotic devices

  • are extensively trained in sophisticated surgical procedures

  • offer physical therapy and occupational therapy services built around the needs of your child and family

Our Spina Bifida Program is at the forefront of patient care for children with spina bifida. At the same time, we bolster our clinical advances through important scientific research that asks—and works to answer—pressing questions about spina bifida and related disorders, such as:

  • What are the best monitoring techniques during spinal surgery?

  • What causes certain types of fractures in kids with spina bifida?

  • How and why does tethered spinal cord occur in some children with spina bifida, and what is the best approach to treating it?

Boston Children's has an on-site orthotics shop

Here at Boston Children's, patients and families living with spina bifida don't have to travel far in search of customized orthotics. The National Orthotics & Prosthetics Company (NOPCO) Brace Shop, an independent store with a location on the hospital's main campus, makes everything from special spinal supports to prosthetic limbs and cranial helmets. The shop was opened in 1972 by Jonathan Hall, MD, former Boston Children's Orthopedic Surgeon-in-Chief. For more information, please visit the NOPCO website

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Congratulations to Benjamin Warf, MD, director of Neonatal and Congenital Anomaly Neurosurgery at Boston 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.

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Our BLIN'G Weekend Wins SBA Award

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Boston Children's Hospital's BLIN’G (Better Living N’ Girls) Weekend has won the Spina Bifida Association (SBA) Partnership/Collaboration Award!

During the SBA Annual Conference in June 2010, sbaMass and Boston Children’s Hospital began discussions regarding possible ways to collaborate in meeting the needs of young girls, ages 11-16, living with Spina Bifida.  From those discussions BLIN’G (Better Living N’ Girls) was born.

BLIN’G Weekend consisted of an overnight at the Omni Parker House Hotel - Boston for 10 girls and a parent.  Attendees arrived Friday evening, and had time to meet and socialize with other attendees and hear a presentation by Ms. Wheelchair Massachusetts 2010, Santara Sen.  Saturday activities included a healthy breakfast and snack and speakers on nutrition, positive living and healthy choices. 

In addition, each girl received a therapeutic Reiki massage and a makeover (including hair, nails, and makeup).  Parents were educated by the Center for Community Inclusion and also had the opportunity for a therapeutic massage and networking.  The day ended with the girls and parents having a late lunch at MOOO Restaurant with a chance to show off their new selves!

The girls were energized by sharing their experiences, learning from others, meeting with and discussing opportunities from women living with disabilities and receiving some healthy pampering.  Everyone left planning for a bigger and better BLIN’G 2012.

No matter how much a person accepts and embraces their disability, most people with a disability struggle to fit in with and assimilate to the rest of society. It is often the ease and confidence with which a person goes through life that determines their ability to do so.  A person with a disability often spends a significant amount of time learning to be as self-sufficient as possible to overcome the stereotypes of disability.  BLIN’G Weekend was initiated to help adolescent girls learn to confidently embrace their abilities, individuality, and femininity.

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  • 617-355-8532
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The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”
- Sandra L. Fenwick, President and CEO
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