Interactive patient guidebook about Spina Bifida complete with text, illustrations and multiple videos produced by UCSF Fetal Treatment. (Free, iPad only)
Our long experience with prenatal diagnosis and planning for optimum care allows us to offer the highest quality treatment whether intervention is indicated before or after birth.
Under the direction of Dr. Michael Harrison, the Fetal Treatment Center was the first institution to develop fetal surgery techniques for. The first open fetal surgery in the world was performed at UCSF since the early 1980's. We presently have more experience with fetal surgery and endoscopic fetal intervention (FETENDO fetal surgery) than any other institution in the world. We are dedicated to myelomeningocele research and treatment innovation.
Spina bifida is a congenital defect consisting of an opening in the spinal column. The most severe form is called myelomeningocele. Most children with this birth defect survive, but they can be left with many disabilities, including paralysis, difficulty with bowel and bladder control, a Chiari II malformation, hydrocephalus (excessive fluid in the brain), and mental retardation. In general, the higher the spinal opening occurs on the back, the greater the impairment.
Infants with myelomeningocele have always had surgery shortly after birth to protect the spinal cord by closing the normal tissues of the back. Very often, a ventriculoperitoneal (VP) shunt was also placed to treat hydrocephalus. Due to the success of the MOMS Study, fetal surgery is now considered to be a treatment option for some cases of myelomeningocele.
Download our pdf handout on Fetal Surgical Repair of Myelomeningocele PDF
The MOMS (Management of Myelomeningocele Study) Trial is a NIH-sponsored multicenter clinical trial which began in 2002 to evaluate what was the best treatment for myelomeningocele — fetal surgery or surgical repair after birth.
The clinical trial results showed prenatal surgery significantly reduced the need to divert, or shunt, fluid away from the brain; improved mental development and motor function; and increased the likelihood that a child will walk unassisted. The MOMS trial has proved that some of the factors causing problems like Chiari II malformation and hydrocephalus are in fact those that develop during the second half of pregnancy. Closing the fetus’s back early may allow some nerve function to be restored in pregnancy, and actually reverse the development of this serious condition.
You can read the results of the MOMS trial in the New England Journal of Medicine: A Randomized Trial of Prenatal versus Postnatal Repair of Myelomeningocele.
Prenatal repair of myelomeningocele involves a fetal surgery handled by a multidisciplinary team of experts. The procedure is much like a cesarean section however the fetus is not removed and the umbilical cord is not touched. An incision is made in the mother’s abdomen and uterus just large enough for the spinal defect to be operated upon. The neural tube and other layers of the back are surgically closed by the neurosurgeon. After the procedure, the incisions in the mother are closed.
After the procedure, patients will remain in the hospital for 4–5 days for recovery. They are cared for by skilled nurses with years of experience in fetal surgical care and the fetus will be monitored via ultrasound. Upon hospital discharge the mother is required to stay locally for at least 10-14 days. Travel home is determined by the mother's condition and the availability of medical services.
Fetal surgery can be a treatment option for spina bifida. We have developed the following guidelines to determine fetal surgery candidates.
Patients who wish to consider fetal surgery at UCSF for the treatment of spina bifida, and providers making a referral please use our online appointment form or call us at 1-800-RX-FETUS. Also please have the following information faxed to 415-502-0660:
The innovative procedures at FTC saved the lives of both Angela and Guy, whom were both diagnosed with severe CCAMs.