Spina Bifida Patient Educational Video, an educational resource and the first patient-centered
educational video for spina bifida,
serves as an objective guide for patients and their families faced with the
prenatal diagnosis as they explore the spina bifida treatment options.
feature provides families with comprehensive, objective information about the
etiology and natural history of spina bifida, an extensive breakdown of the
Management of Myelomeningocele Study (MOMS Trial) and a step-by-step guide
through the comprehensive, multidisciplinary evaluation and consultation
process followed by a detailed look at the fetal surgery patient experience.
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Doctors at Children's Memorial Hermann Hospital in Houston were the first in Texas to conduct fetal surgery for spina bifida.
Based on the MOMS clinical trial funded by the National Institutes of Health, fetal surgery for spina bifida is now considered an alternative option for patients and families. Doctors at Children's Memorial Hermann were the first in Texas to conduct fetal surgery for spina bifida. However, the MOMS trial only discusses statistics. Many parents want specifics. The video and these FAQs are intended to help answer some of these questions.
Contact The Fetal Center at Children's Memorial Hermann Hospital to learn more.
What is spina bifida?
Fetal Intervention for Spina Bifida Prenatal Care Algorithm »
Spina Bifida without Fetal Intervention Prenatal Care Algorithm »
Spina bifida - a major birth defect of the spine - occurs when a fetal spine fails to fully form during early pregnancy. This can develop anywhere along the spine if the neural tube does not close all the way. The severity of the neurological problems is often dependent on the location along the spinal column. Children with defects of the lower spine typically have better outcomes than those who have defects of the upper spine. Spina bifida might cause disabilities that range from mild conditions such as difficulty walking to complete paralysis and loss of bladder and bowel function.
Spina bifida occurs in approximately one in every 1,000 live births and is one of the most common birth defects in the United States. In most cases, the cause is unknown, though it has been associated with maternal diabetes, certain medications, and certain genetic problems.
Another type of spina bifida is meningocele. With meningocele a sac of fluid comes through an opening in the baby’s back. But, the spinal cord is not in this sac. There is usually little or no nerve damage. This type can cause minor disabilities.
How is spina bifida diagnosed in utero?
Spina bifida can be diagnosed during pregnancy. A common blood test, maternal serum alpha-fetoprotein (AFP), is offered during the 15th to 20th week of pregnancy to screen for spina bifida. If the levels of alpha fetoprotein are abnormal (elevated), doctors can use additional tests, such as ultrasound and amniocentesis, to diagnose spina bifida. Use of the AFP test along with an ultrasound typically identifies 90% of cases.
If it is determined that the fetus has spina bifida, a series of ultrasounds will be performed throughout pregnancy to monitor the baby’s progress. A chromosomal analysis may be recommended to identify chromosomal abnormalities. Other tests, including a fetal MRI or fetal echocardiogram, may be recommended if other abnormalities are suspected. A pediatric neurosurgeon will evaluate the prenatal tests and discuss neonatal care and long term outcome.
When is fetal surgery for spina bifida treatment recommended?
For select cases, fetal surgery may benefit infants prenatally diagnosed with spina bifida. Based on the positive results of the study, Children's Memorial Hermann is now screening patients for potential fetal intervention of prenatally diagnosed. Please contact The Fetal Center for questions regarding fetal surgery for myelomeningocele and other prenatally diagnosed anomalies.
What is the MOMS Study?
On February 9, 2011, the New England Journal of Medicine published the results of the Management of Myelomeningocele Study (MOMS trial) that studied the effects of fetal surgery for the repair of spina bifida (myelomeningocele) compared to the routine care of surgery after birth. The study, which followed 158 women, found that if a baby is operated on while still in utero, serious complications of the worst form of spina bifida can be lessened. Fetal surgery decreased the need for shunting at 12 months for the infants in the study, and nearly half were able to walk without crutches by age two-and-a-half.
What counseling and evaluation is required?
You will meet with a comprehensive team of specialists for complete counseling and evaluation prior to being approved for the surgery. Process steps include:
- Meeting with a spina bifida specialist
- Comprehensive ultrasound with 3D imaging of the fetal spine
- Genetic counseling/amniocentesis
- Maternal history and physical
- Initial meeting with maternal-fetal medicine specialist
- Meeting with a nurse coordinator
- Fetal echocardiogram
- Meeting with a social worker
- Counseling with a pediatric neurosurgeon and neonatologist
- Financial counseling
- Meeting with a child life specialist, when other small children are at home
- Final meeting with a maternal-fetal medicine specialist to discuss the procedure and answer any questions
Once you decide to have fetal surgery, your case will be presented to a special committee of experts to ensure it is best for you and your child.
When does the fetal surgery occur?
Surgery is scheduled between 22 and 26 weeks of pregnancy.
What will happen after the fetal surgery?
After the operation, the mother will return to Labor and Delivery for the next 2 days. One nurse will be assigned to the mother during recovery. If there are no complications, the mother should expect to be discharged on the fourth day after surgery. Strict bedrest is required for three weeks following the procedure and an ultrasound is conducted every week to check on the baby.
What happens during delivery?
Delivery by C-section will be scheduled at 37 weeks to prevent the mother from going into labor. This is done to prevent any stretching or tearing of the scar that was left on the uterus from the fetal intervention. An amniocentesis may be performed 1 to 2 days before the C-section to make sure the baby's lungs are mature.
What will happen after delivery?
Once the baby has been stabilized, surgery will be performed to repair the spinal defect. This will typically occur within the first 48 hours following delivery. Doctors will also assess and treat any other complications resulting from the spina bifida and will help you and your family develop a plan for long-term care and follow up.
What are the long-term outcomes and considerations?
Some children will require intensive spina bifida treatment throughout their lives due to the range of complications associated with the defect, including:
- Hydrocephalus (an accumulation of fluid in the brain)
- Neuromuscular issues
- Lack of bladder and bowel control
- Learning disabilities
The level of the spinal defect can provide some prediction of the severity and extent of the neurological problems. However, the severity of the problems will only be determined over time. The Center will help coordinate all of the specialists and services necessary to help you care for your child.
Contact The Fetal Center to learn more.
Note: This information regarding your condition is meant to be a helpful, informative introduction. Because every newborn is different, this may not be applicable to all cases, especially if there are additional defects. Your team of experts at the Center will provide you with information specific to your pregnancy.