This information can be obtained through The Resource Foundation for Children with Challenges Disorder Zone website located at: http://www.specialchild.com/disorder.html. The Disorder Zone has been created for educational purposes only and is not intended to serve as medical advice. The information provided in The Zone should not be used for diagnosing or treating a health problem or disease. It is not a substitute for professional care. If your child has any health concerns, please consult your health care provider.

Spina Bifida (SB)

Introduction

Spina Bifida (SB) is a neural tube defect that is the most frequently occurring, permanently disabling birth defect. SB occurs from the failure of the fetus’ spine to close properly during the first month of pregnancy. Infants with SB often have an open lesion on their spine where significant permanent nerve and spinal cord damage has occurred. SB can range from a mild defect that causes no problems at all to a more serious defect which causes paralysis and loss of bowel/bladder control.

All women capable of becoming pregnant have a risk of having a child with SB, and 90-95% of all babies born with it have no family history of the defect. The occurrence rate of SB in the United States is 1 out of every 1,000 infants, which results in approximately 4,000 babies each year. However, if parents already have a child with SB, the recurrence rate increases to 1 out of 100. The cause of SB is unknown, however, recent studies show that one factor that increases the risk of having a child with SB is having a low folic acid level before conception and during the first couple weeks of pregnancy. It is now recommended that women of childbearing age should consume 0.4 mg of folic acid daily.

Features and Characteristics

There are three types of SB, ranging from mild to severe. Spina Bifida occulta is an opening of one or more of the bones of the spinal column and since the spinal cord does not protrude, little or no damage is caused to the spinal cord. It can take the form of a dimple or a small hair growth on the back. It is the most mild form of SB and often times, this type of SB causes no disability at all.

Meningocele is a more serious type of SB in which the protective covering around the spinal cord pushes out through an opening in the spinal column, forming a sac or cyst. Early surgery can correct the problem with little or no damage to the spinal cord. This type of SB is the least common.

Myelomeningocele is the most severe type of SB. In this form, not only does the protective covering get pushed out through an opening of the spinal column, but the spinal cord itself also protrudes, again, forming a sac or cyst. Spinal fluid may leak out and result in a serious infection. This type of SB usually results in paralysis of the lower limbs and problems with bladder/bowel control, although the actual effect depends on many things including the size and location of the lesion, and the degree of damage to the spinal cord and nerves.

Following is a list of complications that you may find in a child with Spina Bifida:

• Paralysis of legs and feet
• Bowel and bladder complications
• Hydrocephalus
• Learning problems
• Mental Retardation
• Latex allergy
• Tendinitis
• Obesity
• Skin Breakdown
• Gastrointestinal disorders
• Attaining and retaining mobility
• Depression and social concerns

Learning disabilities occur in approximately 80% of all children with Spina Bifida and are more likely to occur in children with hydrocephalus. The majority of children with learning difficulties will fall within the normal range of intelligence, however many will function at a low average level. Children with learning disabilities tend to have poor eye-hand coordination, attention deficits, hyperactivity, and problems with memory, sequencing, organizing, problem-solving, and decision-making.

Diagnosis

Prenatal testing for Spina Bifida (and other neural tube defects) is available by the use of AFP screenings. The AFP screening measures the amount of AFP in the mother’s blood. When a child has a severe form of Spina Bifida, often times the AFP is higher than usual (the screening detects 64-80% of babies born with SB). In addition to an AFP screening, a high resolution ultrasound or amniocentesis may be useful. For those cases not detected by prenatal testing, the defect is recognizable at birth.

Treatment

There is no treatment for SB because the nerve tissue cannot be repaired or replaced. When a child has one of the more severe forms of SB, surgery may be needed the first 24 hours after birth. In this case, doctors try to remove the cyst protruding from the spine, and cover the wound with muscle and skin. Surgery may not, however, prevent paralysis and other related complications. As the child gets older, surgery may be an option to strengthen the child’s spine, lengthen muscles, or control severe bladder problems.

Children with SB sometimes have an active physical therapy program to learn mobility skills such as using crutches, braces, or a wheelchair. In the early stages, physical therapists teach parents how to move their baby’s feet and legs in order to prepare for mobility. Occupational therapy and early intervention programs are also available to prepare the child for school.

In regards to a school setting, it is important that the child be placed in the least restrictive environment as early as possible. For children with learning disabilities, Dr. Donald J. Lollar recommends that the following be provided:

• Sensory stimulation - Allow the child to experience moving in space by rolling and somersaulting. Activities that use eye-hand skills are also recommended to increase visual perception.

• Assistance with verbal skills - Many children with SB have high verbal skills, but cannot remember what they hear or say. They can be helped with this by discussing a book or a movie after reading or seeing it.

• Provide a suitable learning atmosphere - Difficulty paying attention is common among children with SB. Schoolwork may be accomplished better if done in a quiet place. Short assignments and frequent breaks may be of help as well.

• Calming exercises - Children who are hyperactive may need regular exercises (i.e., counting to ten) before acting, and short breaks with light exercise between task and chores.

• Encouragement to organize - It is frequently difficult for the child with SB to organize his things or ideas. Young children should be encouraged to put things away in clearly labeled places. Also, children should be given the help to schedule their daily activities, decide on the order of the activities, and write them down.

• Decision-making - Present choices to the child such as, Do you want milk or juice? Help children think things through by listing the advantages and disadvantages of each action.

Most children can receive a mainstreamed education, and active participation in clubs, youth groups, and educational settings is recommended. As with any other child, acceptance by peers is also important for the child with SB.

What to Expect

With the latest medical advances, children born with SB will live into adulthood and can become independent, productive adults. Many adult individuals with Spina Bifida are college educated professionals in a variety of fields.

This information can be obtained through The Resource Foundation for Children with Challenges Disorder Zone website located at: http://www.specialchild.com/disorder.html. The Disorder Zone has been created for educational purposes only and is not intended to serve as medical advice. The information provided in The Zone should not be used for diagnosing or treating a health problem or disease. It is not a substitute for professional care. If your child has any health concerns, please consult your health care provider.

Helpful Links:

http://fccflorida.org/ddmain.htm
http://www.spinabifidaassociation.org
http://www.birthdefects.org/
www.211-broward.org/specialneeds.htm (local support)
www.sflscisg.org (local support)