Spina Bifida Clinic
If your child has spina bifida, you want the best possible care from experts in this condition. That’s what you get at Phoenix Children’s Hospital, where our, neurosurgeons, , pediatricians and others are ready to help.
Our specialists are committed to personalizing the care for your child’s specific needs. We use specialized imaging to diagnose spina bifida and the latest techniques to treat and manage your child’s condition. If your child is diagnosed before birth, we can determine if a prenatal procedure is the right path for you to take and help organize a consultation with a center that does this procedure.
We consider it an honor to care for children with spina bifida, and we look forward to meeting you and your child.
What Is Spina Bifida
Spina bifida is a type of birth defect where the baby’s spinal column doesn’t form correctly in the womb. This leaves an opening in the spine where the nerves and spinal cord can become damaged. Spina bifida is the most common type of neural tube disorder (birth defects of the brain, spine and spinal cord); between 1,500 and 2,000 babies are born with it each year. In many cases, spina bifida is mild and doesn’t cause health problems, but the most severe forms can cause significant disabilities.
There are four types of spina bifida:
- Spina bifida occulta is the most common type and also the mildest. It’s also called hidden spina bifida. You may never know that your child has this form of spina bifida, or you may see a hairy patch, dark spot or dimple on your baby’s back over the defect in the spine.
- Closed neural tube defects happen when the bones and other parts of the spinal column don’t form correctly, which can sometimes damage the nerves in the spinal cord. Your child may have no symptoms with this condition, or they may have problems with their bladder and bowel functions.
- Meningocele is the rarest form of spina bifida. Meninges are membranes that cover the brain and spinal cord. With meningocele, these membranes push out through a gap in the spine to form a fluid-filled sac on the baby’s back. This usually causes little or no nerve damage, but some children may have paralysis and bowel and bladder problems. Surgeons can remove the meningocele, and many children will then grow and develop normally.
- Myelomeningocele is also called open spina bifida, and is the most severe form of this condition. It happens when part of the spinal cord pushes out through the opening in the baby’s spine. This forms a sac on the baby’s back, and nerve damage can cause paralysis. Infection is also a risk, and babies with this condition need surgery within a few days of birth. Some centers do surgery before the baby is born, and your specialists at Phoenix Children’s can refer you to a center that fits your needs.
The exact cause of spina bifida isn’t known. In general, scientists believe it’s caused by a combination of genetic and environmental factors. If you have had a child with spina bifida, your risk is higher than average for having another child with this condition.
Taking a folic acid supplement reduces your risk of having a child with spina bifida, and it’s important for every woman of childbearing age to take this vitamin.
How Is Spina Bifida Diagnosed?
Spina bifida is usually diagnosed during pregnancy, through prenatal tests such as:
- A blood test called AFP screening. This test is done during the 16th to 18th week of pregnancy to identify a specific protein, which is higher in women carrying a fetus with spina bifida.
- High-resolution ultrasound imaging of the fetus. This test uses sound waves to create images that can show signs of spina bifida.
- Amniocentesis. This test takes a small amount of the fluid in the womb through a thin needle. The fluid is examined for protein levels.
If your unborn baby may have spina bifida, we customize their care through our Phoenix Children’s Fetal Care Center. Our fetal imaging team makes sure the proper imaging tests are done so you and your team can determine if a prenatal procedure would be helpful. That imaging includes high-resolution ultrasound and magnetic resonance imaging (MRI). MRIs use a powerful magnet and radio waves to make detailed images of your baby’s spine and nearby areas.
Your team at Phoenix Children’s will get to know you during your pregnancy and will be excited to meet your baby when the day arrives.
Babies may be diagnosed after they are born when they have an obvious defect on their back, or symptoms such as muscle weakness in their feet, hips or legs. Mild cases of spina bifida may not be diagnosed until later in life. However, if your baby has a dark or hairy patch of skin or a dimple on their back, it may indicate the mildest form of spina bifida. You should tell your doctor about this sign.
Along with MRI imaging, these additional tests give doctors information they need to diagnose spina bifida after a baby is born:
- Computed tomography (CT scan). These tests use a computer and special X-ray technology to create pictures of your baby’s spine and nearby areas.
- X-ray. This test uses low levels of radiation to create images of your baby’s spine and nearby areas.
Your team at Phoenix Children’s Fetal Care Center will show you the details of your child’s imaging tests and explain how the problem may affect your child’s body and brain. We can also recommend a pediatrician in our Phoenix Children’s Care Network who is expert in caring for children with spina bifida.
How Is Spina Bifida Treated?
While spina bifida is usually mild and doesn’t require treatment, the severe forms can cause a number of health issues. These include paralysis, an infection called meningitis, a buildup of fluid in the brain called hydrocephalus, and problems with bowel and bladder functions. Some children also have intellectual and developmental disabilities. The severity of these problems usually depends on where the spina bifida defect is — the higher up on the spine, the more severe the health condition.
Children with severe spina bifida face significant challenges, and we want to help you meet each one successfully. At Phoenix Children’s, we follow guidelines from the Spina Bifida Association that include all aspects of spina bifida care. These guidelines help ensure that patients have all their issues addressed, from birth through adulthood.
Spina bifida treatments aim at minimizing each health problem your child faces. They may include:
- Surgery to close the defect. This minimizes the risk of infection or further injury to the exposed nerves. It’s done soon after birth. The neurosurgeon places the neural tissues back inside the spine and closes the defect by moving muscle and skin over the area. A plastic surgeon may help close large defects.
Babies who are diagnosed before birth with myelomeningocele, the most severe form of spina bifida, may benefit from fetal surgery (surgery done before the baby is born) to close the defect. Only a few medical centers perform this procedure. Your team at Phoenix Children’s can refer you to one of these centers and work with the team there to ensure you and your child receive the best possible care.
- Surgery to correct tethered cord syndrome. This syndrome happens when the spinal cord becomes fastened to the vertebrae or overlying membranes, causing the cord to stretch as the child grows. It can cause weak muscles in the legs and bowel and bladder problems. Early surgery may help the child regain some lost function and prevent further problems.
- Surgery to place a shunt. Some children with spina bifida develop hydrocephalus, which is excess fluid in and around the brain. Our neurosurgery team will watch your child to see if they need a shunt. This is a small tube that is placed to drain the fluid from the brain to the abdomen. If your child has a shunt, we’ll use MRI imaging to check that it is working.
- Treatments for bladder problems. This can include urinary catheterization (flexible tube for draining urine) for a condition called neurogenic bladder. Your team will begin right away to monitor your child’s bladder and kidneys with ultrasound imaging, and will show you how to place the catheter to empty your child’s bladder.
We may also prescribe an antibiotic medicine to protect against infection. Bladder function is very important because an infection can travel to the kidneys, which is more serious. We may also check blood and urine samples periodically.
- Treatments for bowel problems. When spina bifida affects the nerves to the pelvis, the child can have trouble passing stool. This is called neurogenic bowel, and there are many strategies that can help. We will monitor your child’s bowel function as they grow and recommend dietary changes or medications that act as laxatives.
Some children need enemas to flush the stool out once a day so stool doesn’t come out at the wrong time. Your team will explain the ways an enema can be given, which includes a cecostomy tube. With this process, the enema is administered through a tube inserted into the abdomen and the stool is flushed out of the anus.
We encourage older children to participate in bowel care as much as possible.
- Antibiotics. These medications may be used to treat meningitis, which is an infection that can damage the brain. They may also be used to treat urinary tract infections.
- Physical therapy. These exercises and techniques help children who have muscle weakness and joint pain from damaged nerves move more easily.
- Assistive devices. These can include braces, crutches, walkers or wheelchairs. Your team will assess your child yearly to make sure the they are doing well and make any necessary changes to the equipment.
- Regular monitoring. Your team at Phoenix Children’s Fetal Care Center will see your child regularly to make sure your child is meeting milestones as expected. We’ll also be checking their overall neurological health, and if your child has a shunt we’ll check to make sure it’s working. Your team will answer all your questions and help you understand all your child’s care.
What to Expect at Phoenix Children's
Our neonatal intensive care unit (NICU) is Level 4, which is the highest level. We have a special interest in caring for newborn babies with neurological problems, and our neurosurgeons are highly ranked by U.S. News and World report — a nationally respected hospital rating agency.
Obstetricians and high-risk fetal medicine doctors across Arizona know to turn to Phoenix Children’s Fetal Care Center for expert spina bifida care. When you call for an appointment with us, your care will proceed like this:
- One of our complex care schedulers will talk with you. Your scheduler will ask a few questions to determine which group of providers will be the best fit for you.
- Our clinic coordinator will call and go through some of your child’s health history. If there are previous records at another location, your clinic coordinator will ask you to sign a release-of-information form so we can obtain them.
- Your child may have imaging done prior to your clinic day, so your doctor can talk with you about the results. This may include an X-ray, an MRI of your child’s head and spine, and an ultrasound of your child’s bladder and kidneys.
- When you arrive for your visit, our team will greet you and bring you to a room where all your child’s providers will come to visit. You’ll have a chance to talk about issues such as walking and mobility, bowel and bladder health, and anything else that concerns you.
- Our child life and therapy dogs will be around to entertain and comfort your child during any down time.
- We’ll set up appointments with a complex care pediatrician, neurosurgeon, urologist, orthopedic surgeon, nephrologist, psychologist, physical and occupational therapists and any other specialists your child may need.
- At the end of the morning you’ll have a chance to get something to eat and meet some other parents of children with neurological conditions. Volunteers from the local support group will also be there.
Your first visit with us will give you the confidence you need to give your child the best possible care, now and into the future. You should see us once a year for a comprehensive check up. You’ll have a plan for anything that needs to be done to optimize your child’s care and we will share that plan with your primary pediatrician.
Meet Your Team
Our Spina Bifida Clinic provides multidisciplinary, comprehensive care from the following departments: