An Expectant Parent's Guide to Spina Bifida

Medical Issues, and SB in Pregnancy

Spina Bifida Association

Spina Bifida Association

What medical issues do people with SB encounter?
People with SB have a number of medical issues to deal with throughout their lives.

  • Open SB lesions need to be surgically closed (usually within 72 hours after birth) to prevent infection and further damage to the spinal cord.
  • Hydrocephalus is an excessive amount of cerebral spinal fluid (CSF) collecting in the ventricles of the brain. It occurs in approximately 80 percent of patients with SB. Sometimes it occurs before birth, but most often it occurs after the back has been closed. Hydrocephalus is usually treated by surgery to place a hollow tube called a ventriculoperitoneal (VP) shunt that transfers the fluid from the head to an empty space in the abdomen in order to prevent brain damage.
  • Neurogenic (dysfunctional) bowel and bladder is caused by damage to the nerves that control the function of the bladder and the bottom section of bowel and anus. In recent years, a number of treatments have been developed which allow individuals to achieve varying levels of functional continence.
  • Many people with SB face mobility issues, which are dependent on the spinal level of the SB lesion. Most children are able to walk (though usually with the aid of orthopedic bracing and often with assistive devices such as crutches). Some are full-time walkers, but many walk short distances and choose a wheelchair for long distances. It is generally only those with thoracic or high lumbar spinal lesions who end up using the wheelchair as their only method of mobility.
  • Although most individuals with SB have normal IQ scores, they may have learning difficulties; but these can often be addressed when parents and teachers understand the issues and work together.

Every individual with SB is affected differently, and it is impossible to fully predict a child's outcome before or at birth. Outcomes have improved over the past 50 years due to medical advancements. In addition, cultural attitudes toward individuals with disabilities have also changed, resulting in improved services. While some individuals with SB have significant disabilities, others are less severely affected. Many attain advanced education, and have careers and families of their own. They become doctors, teachers, artists, athletes, and parents. Spina Bifida is only one part of their lives; it does not define them.

What are the choices for women carrying fetuses with SB?
To learn the most about the prognosis for your pregnancy, it is recommended that you meet with a pediatric neurosurgeon and/or SB clinic as soon as possible. You will also need to meet with a maternal-fetal specialist or perinatologist to closely follow your pregnancy. You may also meet other specialists who care for people with SB. Use these appointments to learn as much as you can. After you have gathered enough information to understand the immediate and long term implications of SB, consider the choices available to you—terminating the pregnancy, prenatal or postnatal surgery, or adoption—what matters is that you make an informed choice about what works best for you and your family.

Prenatal or Postnatal surgery: For pregnancies diagnosed earlier than 25 weeks gestation, in-utero fetal surgery may be an option to close the baby's back before birth. There are potential risks and benefits of fetal surgery, and it is not appropriate for all women. For those who choose and qualify, an immediate referral must be made to a medical center where the operation is performed. Because fetal surgery is not standard practice at this time, most newborns with SB require surgery shortly after birth to prevent infection and further spinal cord damage.

Post-natal care:
Babies with SB should be delivered at a medical center that specializes in SB so they can receive specialty care during and after birth. This gives you and the specialists every chance to prepare for the best outcome. After surgery, the baby will be monitored in the neonatal intensive care unit. The average length of stay is 2 weeks, but this varies based on the child's needs. When the baby is discharged from the hospital, he or she will have periodic follow-up appointments with a pediatric neurosurgeon, orthopedist, urologist, and possibly other specialists. Appointments will be frequent in the first year, and usually less often as time passes.

Additional information
To get more information and lifelong support, please contact Spina Bifida Association at 800 621 3141, ext 35; or via the website: www.sbaa.org.

Contributing Editors
Tim Brei, M.D.
Colleen Payne (SBA of Kentucky)
Gordon Worley, M.D.

This information does not constitute medical advice for any individual. As specific cases may vary from the general information presented here, SBA advises readers to consult a qualified medical or other professional on an individual basis.

Originally featured on Spina Bifida Association (sbaa.org) and reprinted with permission. Copyright ? 2012 Meredith Corporation.

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