October is Spina Bifida Awareness Month, having a focus on a disabling birth defect. In spina bifida, an area of the spinal column doesn’t form properly, leaving a section of the spinal cord and spinal nerves exposed through an opening in the back. It is the most common birth defect of the central nervous system, affecting about 1,500 babies born each year in the United States. The most severe form of spina bifida is called myelomeningocele.
Too often, families whose babies have been diagnosed with spina bifida and other birth defects are not aware of the treatments available at a place like the Center for Fetal Diagnosis and Treatment (CFDT) at Children’s Hospital of Philadelphia (CHOP).
The CFDT staff pioneered a surgical procedure to repair spina bifida before birth and has been performing it at CHOP since 1998. The CHOP team found that addressing spina bifida by operating on the baby in the womb, months before birth, can reduce the need to divert fluid from the brain, improve neurologic function and increase the likelihood that a child would be able to walk independently. Those same results were later confirmed in 2011 when the results of a landmark nationwide clinical trial, co-led by CHOP, were published in the New England Journal of Medicine and conclusively established the effectiveness of fetal surgery for spina bifida.
“Establishing fetal surgery for spina bifida as a standard of care option was one of the most exciting developments in the history of the treatment for birth defects, and one that our CHOP team has spent years helping to pioneer,” says N. Scott Adzick, MD, Surgeon-in-Chief and Director of the CFDT. “It’s very gratifying to take an idea we had over 20 years ago, test it thoroughly, apply it cautiously in the clinical setting, and, eventually, have the ability to offer a new therapy that can completely change the life of a child.”
To date, the team has completed nearly 300 fetal surgeries for myelomeningocele repair. Babies with spina bifida are delivered in the Center’s Garbose Family Special Delivery Unit (SDU). The SDU is the first birthing unit located within a children’s hospital designed for healthy mothers carrying babies with known birth defects who will require immediate care after delivery.
Improving lives of children with spina bifida
CHOP is also home to the world’s first comprehensive Spina Bifida Program. Designed to be multidisciplinary, it offers comprehensive evaluation and long-term management for infants, children and teens with spina bifida, spinal cord injuries and other spinal cord abnormalities. Medical support services are also available to patients with these disorders.
Most recently, the CFDT was the focus of a three-part documentary series called “TWICE BORN: Stories from the Special Delivery Unit,” that aired on PBS in 2015 and won an Emmy for Outstanding Science and Technology Programming last month. The documentary featured fetal surgery for spina bifida patient Luelle and her parents Shelly and Bobby Ross.
“It is so rewarding to see patients, who before even being born received grave diagnoses, growing up healthy and strong,” said Adzick. “It’s important to be open and honest with families and to be clear that while fetal surgery is not a cure for spina bifida, it has the potential to drastically improve the patient’s life. It has been our pleasure to give families hope for their baby’s future, and we look forward to continuing to treat more and more children.”
Meet some of our spina bifida patients and read their stories.