Welcome to the Spina Bifida Resource Center! Helpful videos by medical professionals, in-depth articles and clarity about SB are the useful things you’ll find here. In addition, you’ll find state specific information such as local clinics, charities, camps for children and more. We have everything you need to make your life easier as you begin to learn more about SB.
The standard treatment for myelomeningocele, the gravest form of spina bifida, is surgery after birth. But this treatment is not necessarily effective, as most babies affected develop severe complications as the pregnancy progresses.
Surgery before birth increases the chances of a baby suffering from myelomeningocele to develop a more natural neural system. It also increases the baby’s chances of walking without orthotic devices, and if carried out before 26 weeks of gestation, decreases death risk. That said, the procedure is not devoid of risks, and it makes premature birth more likely.
Because of these risks, pre-natal surgery for spina bifida in the US was carried out at only three hospitals between 2003 and 2010, only to patients who demanded it, as part of a trial study.
The Study and its Results
The $22.5 million study was initially published in the New England Journal of Medicine and was generally well received by the medical community, who saw it as a good start.
The three medical institutions where the prenatal surgeries took place were Vanderbilt University, Children’s Hospital of Philadelphia, and University of California at San Francisco.
The results of the study that involved 183 surgeries were promising and the percentage of deaths overall from the condition were reduced in the prenatal group. Nonetheless, the condition was not wholly cured, and associated problems persisted. The death rate remained high.
There Is Hope
Parents of babies diagnosed with severe spina bifida are typically asked whether to terminate the pregnancy, because of the physical and mental impairments and lifelong complications their child will suffer. But now prenatal surgery, despite its complications, offers a hopeful alternative.
Overall, the study did much to improve the hopes of parents with babies suffering from spina bifida. Although the prenatal surgery is risky, and can cause early births, it is a big step forward, and one that likely paves the way for further improvements regarding pre-natal surgeries, not only for the spina bifida condition, but for other conditions that can be detected before birth, such asmalformations of the heart.
Pediatric surgeon Dr. Darrell Cass of Texas Children’s Hospital explains how an in-utero surgery to correct spina bifida is performed.
Through our content we want to empower the lives of people with SB and to promote the prevention of it through education, public awareness and research. Working together with local organizations we aim to enhance the lives of those who are affected with SB. We want to build a stronger community and create a better future for those with SB.