​Spina Bifida 

Spina bifida is a birth defect that occurs as a result of abnormal formation of a baby's backbone (spine), causing the nerves that branch out of it to be damaged. The bones (vertebrae) and/or skin surrounding the spine may be malformed, leading to serious infections, problems with bladder and bowel function, and, in serious cases, paralysis.

The medical condition occurs because of problems with the neural tube, which is an early form of the spinal cord in an embryo and usually forms early in the pregnancy and closes by the twenty-eighth day after conception. In some embryos, the neural tube may not form properly or may not close completely resulting in defects in the spinal cord and bones and tissues of the spine. Most cases of spina bifida occur in the lower back.

Children with spina bifida have a gap between their backbone and spinal canal. In some cases, the defect manifests as a visible opening in the back, through which a portion of the spinal cord and the meninges, the membrane that covers the brain and spinal cord spinal cord may push through (spina bifida aperta). These may be visible as a sac along the spinal canal, covered with a thin layer of skin.

In other cases, the defect may not be visible and remains hidden under the skin (spina bifida occulta). Many people with this mild form of spina bifida may not even know they have this disorder as it doesn't cause any neurological symptoms.

Low levels of the vitamin folic acid during pregnancy are believed to be a cause of spina bifida. However, it may also occur in mothers who took pre-natal vitamins, though the cause of this is not known. It is also believed that viral infection, certain medications, and environmental conditions, such as radiation, also may also contribute to this disorder.  ​​

In mild cases of spina bifida, the symptoms may not be obvious. However, in many cases serious symptoms may be caused requiring immediate medical attention. The symptoms will depend on the site of the defect along the spinal cord. At a certain location on the spinal cord, the body parts below it are controlled. Therefore, the higher up on the back the defect occurs, the more problems your child will have.

Some of the signs and symptoms that may be experienced include:

  • A protruding portion of the spinal cord and the surrounding membrane are visible as a sac in the back in severe forms of spina bifida. In some cases it may be covered with skin, while in others the tissues and nerves may be exposed.

  • Problems also occur with the nerves surrounding the site of defect, causing neurological symptoms, such as muscle weakness of the legs, loss of sensation in the legs, or problems with bowel and bladder functions.

  • A build-up of cerebrospinal fluid around the brain can occur, causing increased head size, headache, vomiting, and neurological damage.

  • In extreme cases, seizures and paralysis may occur.

  • There are risks of developing a serious infection called meningitis.

  • Orthopaedic problems may also be exhibited, such as deformed feet, hip dislocation or a curved spine (scoliosis).​

Extreme cases of spina bifida require immediate treatment by your child's neurologist. On birth, if you notice any of the visible changes described above, consult your child's neonatologist immediately to get expert medical opinion and advice. If left untreated, the disorder can cause serious neurological problems, including severe physical and mental disabilities.

You may be referred to one of the eurologists working with the Mind and Brain Service Line of The Aga Khan University Hospital for the treatment of spina bifida.

Your time with your doctor may be limited, so make sure to prepare for your visit beforehand. Here are some tips to help get you started. ​

Test conducted during pregnancy (pre-natal tests) can help diagnose spina bifida before a baby is born. Some of these are:

  • A special blood test done between the sixteenth and eighteenth weeks of pregnancy to see if your baby may have spina bifida. Repeat tests may be requested to confirm this diagnosis.

  • Amniocentesis, which is a test analyzing the fluid in a pregnant woman’s uterus

  • Ultrasounds to help identify any physical deformity in the child’s spine

However, these tests may still be inaccurate and even if the results are negative, there's still a small chance that spina bifida may be present in your baby. 

For treatment of spina bifida, your doctor will first assess the severity of your disorder. In some cases of spina bifida, no treatment may be required. For other cases, surgery is the usually recommended route. The following are some options for surgery:

  • Surgery after birth: in this surgery, the neurosurgeon will put the exposed portion of the spinal cord and the meninges back in place and close the opening in the vertebrae.

  • Pre-natal surgery: this procedure is performed before the twenty-sixth week of pregnancy, and the mother’s uterus is opened to repair the baby’s spinal canal. Neurological symptoms and nerve function seems to worsen less rapidly in children who’ve had pre-natal surgery, though the risks of this surgery are high. In many cases, the child may have to be delivered surgically through a caesarean section to ensure a safe delivery. 

  • Physical therapy and special exercises: in case of severe spina bifida, your child’s nerve function may be affected and he/ she will require on-going treatment even after the surgery. Special exercises will need to be learnt and practised under the guidance of a physical therapist. Additional surgery may also be required to help with any other muscular problems or bladder and bowel functions.

  • Use of crutches and braces: used as a part of treatment, your child may need to use braces or crutches as he/ she grows older to help in mobility to enable them to carry on normal daily activities as independently as possible.

Women of child-bearing age are recommended to take 400 micrograms (mcg) of folic acid to prevent this disorder in children. This is especially important if you are planning to get pregnant. If you have spina bifida or if you have given birth to a child with spina bifida your doctor will advise you to take extra folic acid before you become pregnant.

Please click here for some guidelines on "what to do before your surgery". ​

Please click he​re for some guidelines on "what to do on the day of your surgery". ​

Surgery for spina bifida is a very serious one and carries the risk of possible complications. While pre-natal surgery has its advantages of ensuring slower worsening of nerve function, it carries more risks for the mother and also increases the risk for a pre-mature delivery. Similarly, post-birth surgery for spina bifida is also risky as there is a risk of an incomplete correction and possible damage to the surrounding nerves among other possible complications.

Please click here for some guidelines on "what to do after your surgery" ​

The Aga Khan University Hospital offers various support services to help with managing or recovering from the disease or condition. These include but are not limited to nutrition, physiotherapy, rehabilitation, specialized clinics and some patient support groups. Your doctor or nurse will advise you accordingly.​

The Aga Khan University Hospital offers financial assistance to those who are in need and fulfil the eligibility criteria. For further information, you can contact the Patient Welfare Department. You can find the contact number of the Patient Welfare Department in the 'Important Numbers' section on the website homepage.

The financial counselling staff is available during office hours, at the main PBSD (Patient Business Services Department), to answer your financial queries on treatments' costs and authorize admissions on partial deposit as per hospital policies allow. The financial counsellor in the emergency room is open 24/7. You can find the contact number of the Patient Business Services in the 'Important Numbers' section on the website homepage.

Your doctor and or nurse will give you specific instructions about the prescribed medication. Please ensure that you take or use the prescribed medicine as advised. It can be dangerous to your health if you self-prescribe. Please inform the doctor or nurse beforehand if you have experienced any adverse reactions to any medications in the past. If you experience any symptoms of drug poisoning, overdose or severe reaction please contact the Pharmacy Service at The Aga Khan University Hospital immediately. You can find the contact number of the Pharmacy Services in the 'Important Numbers' section on the website homepage.

The information provided on our website is for educational purposes and not intended to be a substitute for medical advice, diagnosis or treatment. You should always seek the advice of your doctor or other healthcare professional provider.