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Pediatric Spina Bifida (Myelomeningocele)

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Summary

Pediatric myelomeningocele is a birth defect of the backbone and spinal cord. Spina bifida (myelomeningocele) is the most common cause of neurogenic bladder in children. In this condition, the spinal column and spinal cord do not develop properly.

Expanded Overview

It is a birth defect that happens when the bones of the spine do not close all the way during fetal development. With this opening, the spinal cord, nerves, tissue and spinal fluid are exposed and may protrude through the opening as a small sac.

A myelomeningocele can happen anywhere on the spine, but it is most common in the lower back. The lower the myelomeningoceles happens on the spine, the less severe a child’s symptoms will be from the defect. This is because the neurological damage is limited to the part of the spinal cord located below the myelomeningocele – typically a smaller section.

In the past, many children with spina bifida or other conditions that lead to neurogenic bladder would often develop kidney failure.  This is because the bladder dysfunction from neurogenic bladder can lead to high pressure bladders and urinary tract infections that damage the kidneys over time and lead to kidney failure.  Over several decades many advances have been made in managing neurogenic bladder so that renal failure is uncommon in these patients.  

Symptoms

The signs and symptoms of spina bifida may not be noticeable, at least not at first. If your child has the mildest type of the disorder, called spina bifida occulta, you may notice no symptoms or disabilities. Some children born with spina bifida have a small, hairy patch on their back or a dimple or birthmark. Others have a small sac that sticks out from their spine.

If your child has a more serious type of spina bifida, you may see a symptom that is related to the disability or health problem caused by the type of neural tube defect. Examples include:

  • Bladder or bowel problems, such as frequent urinary tract infections
  • Brian damage and learning delays
  • Clubfoot or twisted legs and feet
  • Developmental or learning disabilities
  • Orthopedic problems - weak muscles or paralysis and problems walking
  • Sensitivity to latex, which is in bottle nipples, pacifiers and other baby products
  • Sexual organ dysfunction

Other signs and symptoms of spina bifida may be detected before your baby is born. For example, doctors may notice signs of an open neural tube defect on a routine prenatal ultrasound.

Tests and Diagnosis

Fetal development

Pediatric myelomeningocele happens between 20 and 28 days gestation, usually before a woman knows she is pregnant. Often, spina bifida is detected during a mother’s second trimester of pregnancy as part of a maternal serum screening. This screening can help determine an unborn baby’s risk of several conditions, including spina bifida. A protein called alpha-fetoprotein (AFP) is found in a fetus and the placenta. If a mother has high amounts of AFP in her blood, it means that some of the AFP from the developing fetus might have leaked from an open spina bifida defect. The AFP test may be part of regular screening or done as a single test to look specifically for spina bifida.

Your doctor also can use ultrasound to look for signs of spina bifida in your unborn child or order a test called amniocentesis. In amniocentesis, the doctor inserts a long, thin needle into your abdomen to take a small sample of fluid from your amniotic sac to look for presence of AFP.

After your child is born, if you or your child’s doctor suspect spina bifida, an X-ray of your child’s spine may show any abnormalities.  Use of computed tomography (CT) or magnetic resonance imaging (MRI) can provide more detailed images of your child’s spine.

After delivery

Your child may have a mild defect with no symptoms or a more serious defect that causes specific symptoms and health complications. It’s important to seek help from your child’s doctor and specialists who treat spina bifida and its complications if you notice problems related to the condition.

Children with spina bifida are usually diagnosed before birth or immediately after birth.  The bladder and kidney function of these children is studied soon after birth and these patients are seen frequently throughout the first year of life.  An individualized bladder and bowel management plan will be implemented. 

Many children with other causes of neurogenic bladder are diagnosed immediately after birth or soon after birth as well.  However, some children develop neurogenic bladder at an older age or are diagnosed later.  The evaluation and management goals are similar regardless of age of diagnosis. 

In children with concerning findings such as high bladder pressures, evidence of kidney damage, or urinary tract infections; a medication to lower the bladder pressure and the use of intermittent catheterization to empty the bladder regularly are started.  Catheterization a child’s urethra to empty the bladder may sound intimidating, but with training and support from our staff all parents have been able to learn to do it.  

Treatment

Children who have occulta types of spina bifida, the more common type, may need no immediate treatment unless they begin to have health complications from their condition.

If an infant is born with a severe type of spina bifida such as meningocele or myelomeningocele, doctors need to close the defect immediately.  Children’s Health is one of the few hospitals that performs special types of surgery while a fetus is still in the womb. Doctors can repair birth defects such as myelomeningocele while the baby is still attached to the umbilical cord, then return the fetus to the mother’s womb.

If your child is born with a meningocele or myelomeningocele, doctors will perform surgery within one or two days of your child’s birth to close the defect and prevent further damage or infection. They also will assess the type and severity of your child’s spina bifida and plan treatment for health complications. For example, up to half of children with myelomeningocele develop a condition called tethered cord syndrome. Their spinal cord fastens to a structure that won’t move, which affects the child’s growth and muscle function in the legs, bladder and bowels. These children need early surgery to maintain function and prevent nerve problems.

Children who have problems with their bladder or urinary tract because of spina bifida may need help from a doctor managing the flow of urine. Often, children with spina bifida have nerve damage that keeps the bladder from emptying as it should. This can cause frequent urinary tract infections and kidney problems. Sometimes, doctors must insert catheters or perform a vesicostomy, which is an opening in your child’s lower abdomen to allow urine to flow. Some children need specialized surgery or medications to help their bladders and urinary tract systems function as they should.

Prevention

Research has shown that women who take folic acid supplements or add natural folic acid to their diets can decrease risk of giving birth to a baby with spina bifida. Adding folic acid to your diet won’t guarantee that your baby will not have spina bifida, but it can help. Doctors recommend consuming about 400 micrograms of folic acid each day. Foods rich in folic acid are dark green vegetables, egg yolks and certain fruits.

If you already had a child with spina bifida, or if you have the disorder, you have a greater risk of having another child with spina bifida. You can discuss with your doctor how much folic acid to take before becoming pregnant.

FAQs

What causes spina bifida?

There is no single cause for spina bifida. If a pregnant woman fails to get enough folic acid, a type of vitamin B, in her diet, it can increase the risk of spina bifida, as can a previous birth to a child with the defect. But many factors come together to cause spina bifida.

Is there a cure for spina bifida?

There is no cure for the birth defect, but doctors are researching better ways to treat the disorder and the health problems it causes. Research also is looking into the genetic, or inherited, causes of spina bifida and other neural tube defects to find new ways to treat the disorders.

What is the outlook for my child?

Your child’s level of physical activity and any possible learning disability depend on the type and severity of the spina bifida. Some children will need treatment or assistive devices to remain physically active, and some children may need individual education plans at school. But even though there is no cure for spina bifida, treatments help most children lead active lives.

How does spina bifida cause urinary tract infections?

Nerves control many functions in our body. Spina bifida can damage the nerves that control the bladder and bowel. When this happens, your child needs help making sure that his bladder empties regularly. If it doesn’t, bacteria can build up and cause an infection. A pediatric urologist can look at several different solutions to help prevent bladder and kidney problems in your child with spina bifida.

How many children with spina bifida have latex allergies?

The Centers for Disease Control and Prevention report that up to 73 percent of people who have spina bifida have latex allergies. If your child has been diagnosed with spina bifida, you should watch for signs of allergy such as rashes, hives and wheezing, especially around balloons, pacifiers, rubber bands, beach toys, and many medical items, such as gloves and IV tubing.

How do I get help at school for my child with spina bifida?

Most children with spina bifida do well at school, although some need extra help, especially if they have related conditions such as hydrocephalus. You should contact a school counselor and let the school know that your child has spina bifida so you can have your child tested and have the school coordinate any services your child needs, working with you on an individualized education plan, or IEP.

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