Spina bifida treatment

The best treatment and surgery for your child’s spina bifida (myelomeningocele) depends on a number of factors. These include age, health history, type and severity of the disease and history with other medications and treatments. Spina bifida, a deformity of the spine which happens at birth, affects children at various levels. Myelomeningocele is the most severe form of this disease.

Diagnosis

Spina bifida can significantly affect a child’s quality of life and can lead to multiple other complications. If you are pregnant or think you are pregnant, it is important to be seen regularly by your doctor to check for any complications during pregnancy. To diagnose a mother and the fetus, the doctor will ask a variety of questions. Then, several tests will be performed to find out if the child may be at risk:

  • Maternal serum alpha-fetoprotein test (MSAFP) – This simple blood test is performed on expectant mothers in weeks 16 through 18 of their pregnancies. The test shows how much alpha-fetoprotein has passed through a mother’s bloodstream. If the levels are high, another test is performed to ensure that there was not a false positive. If both levels come back high, the doctor will perform more tests to check the health of the baby. This test does not prove that the child has spina bifida, but high levels do mean that there is a chance it could be present.
  • Ultrasound – This is another of the first tests the doctor will perform to get a glimpse at the fetus and see how development is progressing. An ultrasound can detect signs of spina bifida at a very early stage.
  • X-ray (radiograph) – Postnatal tests also can be done to diagnose this disease. An X-ray may be done initially to obtain an image of the bone structure to see how the child has developed since birth.
  • Computed tomography (CT) scan – If the doctor suspects a child has the disease, the doctor will likely order a CT scan to check for levels of fluid in the child’s brain. Often fluid in the brain can be a sign of severe cases of spina bifida, such as myelomeningocele.

Nonsurgical treatment

If the type of spina bifida is very mild, most children will not require treatment, although some may require surgery as they grow. However, in cases of myelomeningocele spina bifida, a child will likely require many treatments throughout life, starting from the first days after birth. These treatments make conditions better, but there is no cure for this disease. 

Surgery

In most cases, spina bifida myelomeningocele requires surgery within a few days after birth. While the surgery cannot cure the disease, the aim is to prevent symptoms from worsening over time. The doctor may perform the surgery using the following techniques:

  • Protect the spinal cord – Because this disease leaves the spinal cord exposed and open to further injury directly after birth, one of the first surgeries performed after birth is done to close the gap over the spinal cord and reduce the loss of tissue. In many cases a shunt is also placed in the spine to help reduce the amount of fluids that reach the brain.
  • Prenatal surgery – This is still being widely experimented with and is recommended only in some cases. A surgery may be performed in the 26th week of pregnancy to help repair the spine sooner. This surgery involves opening up the uterus.

Research

Most spina bifida research focuses on prenatal surgery as early as possible to reduce the number of later symptoms. There are also studies being done on how the levels of folic acid in a mother’s bloodstream determine the likelihood of the fetus’s spine developing abnormally in the first trimester.

One of the most well-known research cases was performed in 2010 through a study called the management of myelomeningocele study (MOMS). This study looked at 183 expectant mothers whose fetuses were already diagnosed with spina bifida. The researchers conducted tests on the efficacy of performing surgery on a fetus. In this study, fetal skin grafts were used to cover the spine in an effort to prevent further exposure to amniotic fluids and to reduce the symptoms early. While there were obvious risks involved with both mother and fetus, the benefits were found to far outweigh the risks. The benefits were clear: reduced hindbrain herniation, reduced need for shunts in post-birth surgery and reduced severity of neurological effects; the study determined this pre-birth surgery a success.

Currently the surgery is being performed more regularly, but tests are still being done to reduce the risks involved. In Germany, an ongoing study involves a minimally invasive approach in which surgery is performed through only five small incisions. This approach has had results similar to those in the MOMS study, and is being tested further.

As research on prenatal surgery is ongoing, it is a good idea for your conversation about it with your doctor to be ongoing as well.      

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