While spina bifida is usually mild and doesn’t require treatment, the severe forms can cause a number of health issues. 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. Treatments may include:
- Assistive devices: These can include braces, crutches, walkers or wheelchairs. Our team will assess your child yearly and make any necessary changes to the equipment.
- Physical therapy: Our physical therapy team provides exercises and techniques to help children who have muscle weakness and joint pain from damaged nerves move more easily.
- Regular monitoring: Your team at Phoenix Children’s 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 any devices, such as a shunt. Your team will answer your questions and help you understand all your child’s care.
- Surgery to close the defect: This procedure 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 as well as 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 monitor 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: These treatments 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 stool out once a day, so it 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.