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There are many ways you can help children and their families get the care they need.
• Groundbreaking, minimally invasive techniques for treating the abnormal build-up of fluid in the brain—known as
hydrocephalus—that is common in patients with spina bifida, including endoscopic third ventriculostomy choroid
plexus cauterization (ETC/CPC). This procedure alone, perfected at Boston Children’s by our own Dr. Benjamin Warf,
is why many expectant mothers of babies with Spina Bifida choose to come to Boston to have their babies. Put simply,
it’s a safer, permanent alternative to a shunt for the management of spinal fluid present in hydrocephalus.
• Pediatric robotic surgery, allowing highly trained surgeons to perform complex postnatal operations on children through
very small openings, thereby reducing pain, recovery times, and hospital stays.
If you are an expecting mother who has received a prenatal diagnosis of spina bifida, you may be feeling overwhelmed by the decisions you have to make. Our goal is to provide clarity during this time of chaos by providing the most complete information about diagnosis and treatment.
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 dedicated 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/or MRI to produce detailed images of your unborn child. The results of this test 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 24-28 hours of birth to repair the spine and may include additional surgeries to detether a spinal cord that has attached to the spinal column or to repair bladder functions. Learn more about spina bifida surgery.
We partner with best-in-class obstetricians and perinatologists at Brigham and Women’s Hospital and the Beth Israel Deaconess Medical Center to coordinate delivery, post-natal care and follow up care. On the day of your delivery, your newborn baby will be transferred to our Neonatal Intensive Care Unit (NICU) where he or she will receive treatment from world-class surgeons. A mother and family can access the NICU easily and visit her baby whenever she wants.
Read more about our Advanced Fetal Care Center.
Boston Children’s Hospital is the birthplace of pediatric neurosurgery and home of the #1 ranked Orthopedic, Urology and Neurosurgical centers by U.S. News and World Report. You can feel confident that your child’s surgery is in the most experienced hands possible.
If your baby is born with myelomeningocele, the most common and severe form of spina bifida, he or she will require surgery within the first few days of life. Immediately upon delivery, our team will examine your baby and cover the spinal defect with a sterile dressing.
After visiting with you, your baby will receive care in our world class Neonatal Intensive Care Unit (NICU) where, within 24-48 hours, he or she will receive necessary surgery to close the defect and minimize the risk of infection or further trauma. If you delivered at Brigham & Women’s Hospital or the Beth Israel Deaconess Medical Center, you will be able to access the NICU by a pedestrian bridge or a walk across the street and visit your baby whenever you want.
For many children born with spina bifida, their spinal cord can become abnormally attached to the tissues around the spine. As a result, the spinal cord can’t move freely as it should. This is known as tethered cord syndrome, and it is very treatable.
Surgical approaches can vary widely in duration and complexity. Some procedures may be relatively quick and simple. Untethering surgery is more involved in children who have tumors or fatty deposits on the spinal cord.
At Boston Children's, we use the most sophisticated technology available to treat this condition, such as:
• Contact YAG (yttrium-aluminum-garnet) and CO2 laser, which use high-energy beams of light to puncture
or cut away precise areas of tissue
• Operating microscope, a highly sensitive microscope capable of great levels of magnification and used in virtually
all untethering surgeries at Boston Children's
• Ultrasonic bone cutting scalpel if bone removal is needed
We take great caution to ensure proper healing of the wound. In addition to pain medication, we may also recommend that your child have a couple days of bed rest. Certain motions like twisting and/or bending may be limited for a while.
Endoscopic third ventriculostomy/choroid plexus cauterization (ETC/CPC) is a minimally invasive that treats hydrocephalus in children whose disease stems from an obstruction between the ventricles. It also eliminates a future dependence on shunts.
Benjamin Warf, MD, a Boston Children's neurosurgeon and director of our Neonatal and Congenital Anomaly Neurosurgery, received a “genius grant” from the John D. and Catherine T. MacArthur Foundation for his work developing this surgery to treat hydrocephalus in infants. Dr. Warf works very closely with the Center for Disease Control, the March of Dimes, and other internationally recognized organizations to help prevent and treat the nearly 300,000 children born with Spina Bifida worldwide.
Boston Children's Hospital has been a worldwide innovator in diagnosing and treating hydrocephalus (excess fluid in the brain) for decades. This condition is very common with spina bifida and can lead to serious, long-term neurological damage if not treated promptly.
Over 60 years ago, we were the first hospital in the world to treat hydrocephalus with shunting, which reroutes excess fluid from the brain into another body cavity. It is the most common treatment used today.
Our neurosurgeons continue to be leaders in the treatment of hydrocephalus by introducing, improving and teaching new, minimally invasive treatments that eliminate the need for shunts.
Bladder complications are common among children with spina bifida—often the bladder is too small or too stiff to fully expand. This results in incontinence and kidney damage. Bladder augmentation is a surgery that increases size to improve its ability to stretch.
We are one of only a very few hospitals that offers minimally invasive, robotic bladder augmentation surgery. Our surgeons use this approach whenever possible; not all children are a candidate for this minimally invasive technique.
Using the da Vinci Surgical System, we can operate on your child’s bladder through just a few small incisions. The da Vinci System features a magnified 3D high-definition vision system and tiny instruments that bend and rotate with extreme precision. This minimally invasive approach reduces pain, scarring and recovery time for your child.
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.
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.
• 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.
For more information about these and other events, please visit the SPAGNE website.
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.
For an appointment, more information or to obtain a second opinion for your child, please call us at 617-355-8532 or request an appointment online.
If you have a medical question about your child with spina bifida, please call our Nurse Line at 617-355-7704.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”