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What is spina bifida?


Spina bifida, a condition present at birth, includes three kinds: Occulta  (mild and usually harmless), Meningocele  (mild disabilities or problems later), and Myelomeningocele. This fact sheet is about the most serious -- Myelomeningocele. Spina bifida occurs while the baby is still developing and growing inside the mother. The baby's spine doesn't develop correctly. At birth the spinal cord is open at the back or exposed (also called a neural tube defect). Early in pregnancy, cells form a closed tube (neural tube) that eventually becomes the baby's brain and spinal cord. A neural tube defect happens when the tube does not completely close. A neural tube defect can happen anywhere on the spine, but usually happens to the lower part of the spinal cord. A child born with a neural tube defect usually will have difficulty walking, and may need leg braces, crutches, a walker and, in some cases, a wheelchair (Gargiulo, 2001).

Spina bifida differs for every person. Many children with spina bifida have hydrocephalus (a build-up of fluid on the brain). Because children with spina bifida have problems with the spine, the fluid in the brain does not drain properly. To treat
Other potential difficulties occurring with spina bifida include full or partial paralysis (the inability to move part or all of the body). Children with spina bifida and full or partial paralysis also may have problems with weight gain and obesity.

Since children with spina bifida usually have damage to the spine, they can have problems with the nerves controlling the bladder and bowels. (These nerves are in the lower part of the spinal cord.) They may have problems controlling their bladder  and bowel (unable to tell when they need to use the bathroom).

Children with spina bifida more likely have learning disabilities, problems with depression, and an allergy  to latex (reaction to a common type of rubber). They sometimes have social and sexual issues  because they may go through puberty at a younger age than most children.


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What can I do to help my child?


You have made an important first step by reading more information on spina bifida. You also can talk with other parents of children with spina bifida. They have gone through what you are going through now and perhaps can help. You also can get great help from parent support and advocacy groups such as Parent to Parent of Miami. Research tells us that the earlier we begin to help children grow and develop, the better the results for the child and family.



Below are some checklists to help your child. Remember, you are not alone.

Getting Started

IN THE STATE OF FLORIDA:
 Get my child evaluated (tested):

If your child is between ages birth to 3 years old, your child can be evaluated by a team of experts through the Early Steps  program for free. Your child may be eligible for free services. You can contact one of the centers closest to your home.


If your child is 3-5 years old and has problems with learning, speaking, playing, seeing, walking or hearing, he or she can still receive free screening through the Child Find/Florida Diagnostic and Learning Resources System (FDLRS/South)  program. They also provide testing for special education programs. (If your child is already in the Miami-Dade Public School system, your child must be tested through the school.)



Contact Children's Medical Services (CMS): CMS, with local offices, sometimes will refer children to medical centers that work with CMS. Services are provided to help care for children with disabilities, special needs or major medical conditions. These services range from early intervention programs such as Early Steps to ones for a specific medical condition.



Contact the Agency for Persons with Disabilities: To register for services. If your child is 3 or older and has spina bifida, he or she is eligible to apply for services with this agency. Examples of some services for which your child may be eligible are:
  • Respite: A caregiver comes to your home so you can take a break for shopping, visiting friends and family or to have a night out.
  • Medical supplies: Van lifts, wheelchairs, strollers, adaptive eating devices, communication boards.
  • Behavioral services: Teaches your child how to deal with day-to-day problems.
  • In-home supports: Personal care assistance, companions, homemaker services.
For more information on services and how to apply, please click here.

Work with my child's service providers: A service provider is anyone who works with you and your child, such as a pediatrician, a physical therapist, a teacher, a principal, a social worker or any professional. You know more about your child than anyone else and are the main influence in your child's life. Here are some tips for speaking with service providers:
  • Feel free to ask questions and make comments. No one knows your child better than you. Be specific about what you know about your child and what you want and need for your child. Be honest about what you expect, any worries you may have, or about anything you don't understand.


  • If you think your child needs something in particular (like a psychology evaluation or assistive technology), keep asking until you get it or until you learn why it is not needed.


  • Work with professionals in early intervention or in your school to write your child's IFSP or IEP. Be sure it includes such services as speech-language pathology, physical therapy and occupational therapy if your child needs these. Don't forget about assistive technology, too.
Your child may be qualified for more services under IDEA. Check with your child's school.

 Talk with my child's teacher: Ask the teacher to talk with you often about how your child is doing. One way to stay in touch is to use a notebook that goes between home and school. You also can stay in touch through e mail or phone calls. If your child is having trouble with schoolwork, ask your child's teacher to:
  • Provide advance schedules or tools to help your child stay on track.
  • Provide appropriate accommodations/modifications or changes to the curriculum. (Your child may be eligible for these through IDEA.)
Get more information: Visit more websites. Read a book. Watch a video on spina bifida. Include your child and family. Talk with another parent. Parent to Parent of Miami  can help you meet other parents and get services.




 Help my child's physical movements and development: Take part in family fun, recreation activities, play and all parts of your daily life. Having spina bifida doesn't mean your child should miss out. Encourage your child to learn and develop better movement and control of muscles. Many fun summer and outdoor activities are available. (For a list of activities and programs, see below.)

Dial 211 to find recreation areas and programs


Urge your child to move around: Do whatever gets your child moving. For example, put a favorite toy just out of reach, or try "dancing" with your child, playing, rolling on the floor or swinging. Encourage your child to move and have fun like any child.

Assistive technology may help your child: Ask professionals who evaluate your child how assistive technology can help.

Learn more about what you can do for your child: Ask lots of questions about how and what you can do to let your child live up to full potential while living your own life. Doing ordinary things such as eating, bath time, shopping, traveling in the car and family outings are perfect times to make a difference in your child's abilities.


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What everyday things can I do to help my child?


You can combine what you do in an ordinary day with things to help your child's development. Bath time, mealtime, shopping, traveling in the car and family outings are great times to do this. Look below for some suggestions, and click on Parents Are Their Child's First Teachers  for more detail on how to use these suggestions.

 Read to my child: Bedtime stories are a wonderful way to bond with your child and build happy memories. The next day you might ask a question or two in a low-key way about what you read to see if your child understands the story. Learn more about reading skills and children with learning disabilities by looking at the National Dissemination Center for Children with Disabilities fact sheet on Reading and Learning Disabilities.

 Sing with my child: The old nursery rhymes are fun for everyone. Wee Sing , a collection of children's songs, comes with an illustrated song book. The audio packages teach new and classic children's songs. Great for the car or home. Little Language Songs for Little Ones  by Laura Dyer is a CD collection of songs written with a specific language goal in mind.

 Help my child focus attention: Get rid of distractions, such as noise or flickering lights. For example, your child should not have a TV or radio on while doing homework.

 Teach my son or daughter how to be organized: Show your child how to break down big tasks into easy steps. This helps avoid frustration and anxiety and can let your child finish things (and, thus, furnish a feeling of success).

 Make sure my child has a trusted adult with whom to talk: Children with spina bifida can sometimes have problems with self-esteem. Some may be prone to depression or have problems in social situations with other children. Children need ways to express these feelings. Sometimes children will talk more easily with adults who are not their parents. Children need an adult with whom to talk freely. A therapist, a psychologist or a school counselor often can help your child with difficult feelings.

 Have my child wear a Medic Alert bracelet if necessary: That way, in case of emergency, vital information on your child's condition is available

 Have a neurologist check my child's shunt at least once a year: A neurologist should do an MRI or CAT scan once a year to make sure your child's shunt is working at its best.

 Watch for the signs of shunt malfunction: Once in a while a child's shunt may stop working correctly. It is important to make sure that you and any other caregiving adult (including child care, family and teachers) know the signs. Some signs of shunt problems include:
  • Fatigue (tired all or most of the time) or sleepiness.
  • Dizziness.
  • Frequent headaches.
  • Very cranky all the time or a big change in personality.
  • Fever.
  • Vomiting.
  • Pain.
  • In very severe cases, vision problems and seizures.

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How can I deal with all this?


First of all you need to take care of yourself!

Having a child with a disability is hard work. While there are times of joy and celebration, there are times of heartbreak too. It is easy to get overwhelmed.

You can make a difference in your child's life by working with your child and therapists, doctors and teachers, but before you can take care of anyone else be kind to yourself. Taking care of yourself is not selfish, but instead necessary. You can't help your child if you are overworked and overstressed.

Figure out how to take care of your own needs. The next time friends or family say, "What can I do to help?" let them babysit or lend a hand so you can have some time to yourself. Some things you can do to "recharge your batteries":
  • Do something that makes you feel happy -- going out with a loved one or friends, taking a long bath or a creative project.

  • Exercise is vital for your mind, body and spirit, e.g., long walks, lifting weights, bike riding, an aerobic class. Make sure it is fun.

  • Talk with other parents of children with disabilities: (Parent to Parent of Miami  is a great place to start.) This can help with practical tips, cheer you up, and be a source of strength.

  • Stay hopeful: Many parents find the following poem, "Welcome to Holland," to be a comfort. Click here to read Welcome to Holland.



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Do many children have spina bifida?


Spina bifida affects about 1 in every 2,000 babies born in the United States. Folic acid reduces the likelihood of spina bifida, and women should take supplements before and during pregnancy. Research tells us that spina bifida is passed down from parents to children, and that nutrition is a factor. Women of child-bearing age should take 400 mcg (micrograms), which is the same as 0.4 mg (milligrams), of folic acid in a vitamin every day (SBAA, 2005).


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What does this mean about intelligence and learning?


Children with spina bifida may have problems with motor skills (moving their bodies), paying attention, memory (remembering things) and organization. Some children with spina bifida (and hydrocephalus) also may have learning problems. They may have difficulty with paying attention, expressing or understanding language, and with reading or math. Early intervention can help prepare children with learning problems for school.

Sometimes there will need to be adjustments made at school (usually called "accommodations," or modifications in the curriculum). Basically this means the school needs to adapt your child's school setting so your child has a better chance to learn. Section 504 of the Rehabilitation Act of 1973 requires programs receiving federal funds to make facilities accessible. This can mean changes to the building (for example, adding elevators or ramps) or schedule or location changes (for example, offering a course on the ground floor).

It also may include changes in how schoolwork is given to your child. Children with spina bifida often have problems with learning, but usually have normal or above-normal intelligence. These children may process information differently than other children. Some examples of adjustments to help a child with spina bifida:
  • More time to complete assignments.
  • Less homework.
  • A classroom peer tutor to help your child get organized.
  • Extra time to copy information from the board.
A qualified psychologist or neuropsychologist should evaluate (test) your child to see strengths and weaknesses for learning and intelligence. Every child with spina bifida is different, and not all children with spina bifida will have learning difficulties.


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What does this mean about my child’s health?


Most children with spina bifida need surgery to close the open spine within 24 to 72 hours of birth. Surgery closes the back, but doesn't fix the spine. A child born with damage to the spine or brain will likely have this for life. Many children with spina bifida also have hydrocephalus (fluid in the brain). This means putting in a shunt with surgery to drain the fluid. The shunt will stay in place for life.

Many children with spina bifida also have a defect called Arnold Chiari-II malformation. This defect can cause severe problems with such oral and motor skills as speaking and walking as well as affect abilities that require vision skills like judging distances or catching a ball. It also can cause problems with breathing and sometimes with intelligence.

Often children with spina bifida also have scoliosis (where the back curves in an "s" shape) or kyphosis (back curves outward in a "c" shape). A child with scoliosis or other curve to the spine should see a orthopedic surgeon. For more information on scoliosis, please click here.

Children with spina bifida often need such services as occupational, physical and speech therapy to improve their ability to carry on conversations, ability to move and flexibility. They also may need some of the same supports and strategies as children with learning disabilities. For more information on learning disabilities, please click here.


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Who are some professionals my child may need to see?


Your child may need to see many different health care specialists. For example:

Pediatrician: A doctor who specializes in treating children. The word "pediatric" in front of a professional's title means he or she works with children.

Pediatric physical therapist: A professional trained to help children make muscles stronger and the joints in their arms, legs and chest more flexible.

Pediatric occupational therapist: A professional trained to help children with joint and muscle conditions. This therapist also help figure out what problems with these joints and muscles will have on a child's daily living, e.g., getting dressed and eating. The therapist also can design and suggest assistive devices.

Pediatric speech-language therapist: A professional who evaluates and treats communication disorders (problems with speech) and swallowing problems. A speech-language pathologist is sometimes called a speech therapist or speech pathologist.

Pediatric audiologist: A professional trained to evaluate hearing loss and related disorders, including balance (vestibular) disorders and tinnitus  (ringing in the ears). The audiologist also helps individuals overcome problems with hearing loss.

Pediatric psychologist: A professional who tests your child's ability to learn and reason. A thorough evaluation (testing) by a qualified psychologist can tell you if your child's ability to learn has been affected by having spina bifida or a related problem. An evaluation is painless and usually doesn't take long.

Social worker and counselor: A professional who provides counseling and emotional support for the child and family, and may help coordinate services, too.

Care coordinator: An individual responsible for organizing the details across agency lines and serving as your contact to help you and your family get services and assistance.

Early childhood special educator/special-education teacher: A teacher trained to work with your child, focusing attention on your child's development and working with you to learn techniques to benefit your child.

Assistive technology specialist: A person who works with individuals with disabilities to provide assistive technology solutions. These devices help a person with a disability with any daily living task such as eating, speaking, getting around, working, playing. An assistive technology specialist is familiar with many options to help your child live life to the fullest. Some services and assistive devices may be covered under Medicaid.

Pediatric orthopedic surgeon: A doctor specializing in treating conditions of bones, muscles and joints in children. The surgeon also can help children with scoliosis or other types of curves of the spine. Sometimes surgery is necessary for children with spina bifida.

Pediatric otolaryngologist: A doctor specializing in treating conditions of the ears, nose and throat in children.

Pediatric neurologist: A doctor specializing in the diagnosing and treating children with disorders of the central nervous system, including the brain and spinal cord as well as the peripheral nervous system.

Pediatric neurosurgeon: A doctor specializing in surgery for children on the brain, spine and other parts of the nervous system.


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What are some websites where I can learn more about spina bifida?


Spina Bifida Association of America http://www.sbaa.org. The Spina Bifida Association of America serves the 70,000 adults and children who live with spina bifida. The mission is to promote the prevention of spina bifida and to enhance the lives of all affected. The site also provides fact sheets for parents about spina bifida issues. (http://www.sbaa.org/site/PageServer?pagename=asb_facts)

The Hydrocephalus Association http://www.hydroassoc.org/. The Hydrocephalus Association was founded in 1983 to provide support, education and advocacy for individuals, families and professionals dealing with the complex issues of hydrocephalus.

Educational Issues Among Children With Spina Bifida http://pediatrics.med.miami.edu/mailman/EducationIssueswSpinaBifida.pdf. From the Spina Bifida Association of America. (This is a .pdf file that uses Adobe Acrobat Reader, a free program available at: http://www.adobe.com/products/acrobat/readstep2.html.)

Bandaids and Blackboard http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/sitemap.html A great site for kids, teens and parents of kids with medical challenges.

Early Steps http://www.cms-kids.com/EarlyStepsHome.htm Search Florida's Early Intervention Program home page for resources listed for parents.

KeepKidsHealthy.Com http://www.keepkidshealthy.com/welcome/conditions/spinabifida.html. A great website with book recommendations and basic information.

March of Dimes http://www.marchofdimes.com/pnhec/4439_1224.asp. Provides a quick reference and fact sheet.

NICHCY http://www.nichcy.org/pubs/factshe/fs12txt.htm Great quick reference and fact sheet on spina bifida.


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What are some books I can read to my child or for myself?


Christal: Coping With Spina Bifida by Karen Snyder Travis. Written from the perspective of a young girl.

Spinabilities: A Young Person's Guide to Spina Bifida by Marlene Lutkenhoff (Editor), Sonya G., Md.D Oppenheimer (Editor). This is good for young adults, teens and their parents. Includes suggested resources with addresses and phone numbers.

Susan Laughs by Jeanne Willis and Tony Ross. This book shows that children with disabilities are -- in personality, sense of humor and soul -- just like other children.


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