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Spina Bifida in Children
WHAT YOU NEED TO KNOW:
Spina bifida is a neural tube birth defect that prevents your child's vertebrae from forming correctly. The nerves in your child's spinal cord may be exposed, or form outside the vertebrae or skin. Spina bifida has several types. Each type may affect your child in a different way. Spina bifida may cause nerve or brain damage. These increase his or her risk for learning disabilities, fluid buildup in the brain, or seizures. He or she may have delays in education, self-care, and social skills. He or she may need to use a wheelchair, cane, or crutches. He or she may also have problems controlling his or her bladder and bowels.
WHILE YOU ARE HERE:
is a legal document that explains the tests, treatments, or procedures that your child may need. Informed consent means you understand what will be done and can make decisions about what you want. You give your permission when you sign the consent form. You can have someone sign this form for you if you are not able to sign it. You have the right to understand your child's medical care in words you know. Before you sign the consent form, understand the risks and benefits of what will be done to your child. Make sure all of your questions are answered.
- Antiseizure medicine helps control and prevent seizures.
- Anticholinergics help your child urinate.
- Antibiotics may be given to treat or prevent an infection caused by bacteria.
- Head circumference is measured to find out if your child has swelling in his or her brain. Your child's healthcare provider will measure around your child's head with a tape measure.
- A neurological exam is a series of tests that may show if spina bifida has affected your child's brain. Healthcare providers will check how well your child's pupils react to light. They may also test his or her hand grasp and reflexes.
- Intracranial pressure monitoring is a procedure that is done if healthcare providers think your child has increased pressure on his or her brain. Healthcare providers will place a small tube inside your child's skull to measure the pressure on his or her brain. The tube is connected to a monitor.
- Blood and urine tests are used to monitor your child's kidneys, and to check for infection.
- Bladder tests will help show how well your child can control urination. X-rays of your child's bladder will be used. Your child may be given contrast liquid to help the bladder show up better on the screen. Tell the healthcare provider if your child has ever had an allergic reaction to contrast liquid.
- Ultrasound uses sound waves to show pictures of your child's bladder on a monitor.
- CT scan pictures may be taken of your child's spine and skull.
- MRI is a scan that may be done during your pregnancy or after your child's birth. An MRI uses a powerful magnet and computer to take pictures of the inside of your child's spine and skull. Do not enter the MRI room with anything metal. Do not let your child enter with anything metal. Metal can cause serious injury. Tell the healthcare provider about any metal in or on your body or your child's body.
- Spinal surgery may be done to close or place your child's spinal cord back inside the vertebrae. Surgery will most likely happen within a day of your child's birth. Your child may also need other surgeries to repair body parts, such as a clubbed foot or severe spinal curves.
- Ventricular shunting is surgery to place a shunt inside your child's brain. A shunt is a tube used to prevent spinal fluid buildup inside the skull. The shunt will run from your child's brain down to his or her abdomen.
Spina bifida that is not treated may cause deformed bones and muscles. Your child may have long-term pain, weakness, or loss of movement in his or her legs, even with treatment. He or she may also have a curved spine or bone weakness. Your child may develop a severe latex allergy or breathing problems. He or she may develop hydrocephalus, even with treatment. This is an increase in brain pressure from fluid buildup in your child's skull. Spina bifida may also cause permanent bowel and bladder problems, or organ damage, such as kidney failure. These conditions may be life-threatening.
CARE AGREEMENT:You have the right to help plan your child's care. Learn about your child's health condition and how it may be treated. Discuss treatment options with your child's healthcare providers to decide what care you want for your child.
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The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.
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