When an ultrasound detects something out of the ordinary, it’s natural for expectant parents to be worried. But new technologies and procedures, as well as a better understanding of fetal development, can help address potential birth defects. That’s the case with spina bifida, a defect that occurs during the first month of pregnancy when the spinal column does not develop properly.
For many expectant mothers who learn their developing babies have spina bifida, the answer may be in-utero surgery to better the quality of life for their children. Previously, moms-to-be had to travel around the country for this life-changing surgery. Today, the experienced team at Orlando Health Winnie Palmer Hospital for Women & Babies is performing in-utero surgery to help correct spina bifida right here in Central Florida.
Led by pediatric neurosurgeon Dr. Samer Elbabaa, the Orlando Health Winnie Palmer team of fetal care experts is here to guide you through your pregnancy. They have the experience and knowledge to provide the best care for babies with spina bifida while allowing you to choose a treatment plan for your family. At the Fetal Care Center, we strive to anticipate and meet all your needs during pregnancy and even after birth. Orlando Health Arnold Palmer Hospital for Children provides comprehensive follow-up care through early adulthood for children with spina bifida.
Spina bifida is a neural tube defect that occurs during the first month of pregnancy when the spinal cord does not develop or close properly. This defect can be so mild that some people do not even know they have it. In its most severe form, the defect leaves a section of the spinal cord and nerves exposed in a sac on the patient’s back.
Spina bifida can lead to many physical disabilities, including problems with walking and mobility, bowel and bladder function, wounds healing and fluid accumulating in the brain (hydrocephalus) requiring shunt surgery.
Spina bifida occurs in approximately four out of every 10,000 live births in the United States. About 166,000 people in the U.S. live with this birth defect.
The three most common types of spina bifida include:
Yes, babies also may experience less common types of spina bifida or complications that are associated with the condition. They include:
Spina bifida usually is diagnosed during pregnancy through routine ultrasound screening of the fetus. Once that occurs, our doctors may determine that some babies are candidates for in utero surgery to repair the defect. This type of treatment is performed between 19 and 26 weeks of pregnancy because the fetus is considered viable and could survive if an emergency delivery were required.
Not every baby with spina bifida is a candidate for surgery, but those that are tend to have better results with in utero surgery than waiting for an operation after delivery. Our fetal surgery team follows the inclusion and exclusion criteria of the MOMS trial. Every mother and her fetus undergo a thorough workup to determine their candidacy for fetal surgery.
During in utero spina bifida surgery, a team of doctors with a range of specialized skills will be present in the operating room to take care of the mother and the baby. The team at Orlando Health Winnie Palmer includes pediatric neurosurgeon Dr. Samer Elbabaa, clinical perinatologist Dr. Cole Greves, maternal fetal physician Dr. Gregory Locksmith, an obstetric anesthesiologist, a pediatric anesthesiologist and a neonatology specialist.
Mothers usually remain in the hospital for three to five days after surgery and are on modified bed rest for three to four weeks after surgery to reduce the risk of preterm labor. Expectant mothers who’ve had fetal surgery are scheduled for a C-section (Cesarean birth) by 37 weeks.
Fetal surgery for spina bifida is not a cure, but studies show that prenatal repair can offer significantly better results than traditional post-delivery repair. Spina bifida is on a spectrum and those affected can have different challenges, including both physical and mental impairments. Fetal surgery for spina bifida has proven to greatly reduce the need to divert spinal fluid from the brain and can improve mobility and the possibility that a child will be able to walk independently or with minimal assistance.
If a mother doesn’t qualify for fetal surgery or she decides not to have the surgery, our Fetal Care Center experts will continue to follow her personalized care plan for prenatal care and support during her pregnancy.
It is important for mothers of babies with spina bifida to deliver their babies at a medical center, such as Orlando Health Winnie Palmer, that specializes in spina bifida so they can receive the best possible care. A cesarean birth usually is safer for babies with myelomeningocele because they often are in a breech position.
Then, surgery to replace and cover the membranes and nerves usually takes place soon after delivery to minimize the risk of infection or further damage to the exposed nerves. During the procedure, the surgeon also may place a shunt to control hydrocephalus in the brain. Each baby then will be closely monitored in our neonatal intensive care unit (NICU).
As they grow, children with spina bifida require multidisciplinary care for most of their lives. Children may need to see a number of specialists, including a neurosurgeon, orthopedist, physical therapist, speech therapist, urologist and occupational therapist. Our team of healthcare professionals is here to help your child achieve their fullest potential.
The pediatric spina bifida program at Orlando Health Arnold Palmer offers comprehensive care and simple scheduling for multiple medical appointments. Our spina bifida specialists are available to meet with patients during a clinic every Friday. On a single day, patients can see physicians and experts in:
After the clinic, a team conference allows specialists to discuss each patient and set goals for the next six to 12 months. Between appointments, our dedicated nurse coordinators stay in touch with patients and their families to guide patients’ care plans. These elements make the care received in the pediatric spina bifida clinic some of the best and most personal care available for patients with this complex condition.
Orlando Health is working to create the same multidisciplinary network of physicians, therapists and social workers to assist adult spina bifida patients with their needs. In addition to establishing a new network of care, this program also will teach life skills to adult patients that help them become independent.
Because of this joint effort between Spina Bifida Association of Central Florida (SBACFL) and Orlando Health, Florida will be one of the few states in the country that can provide coordinated and comprehensive adult care for spina bifida patients.