Spina Bifida

 

 

Objectives:

 

At the end of this class, you will be able to:

 

1. List some of the causes of spina bifida.

 

2. Describe the types and signs of spina bifida.

 

3. Care for the person with this disorder.

 

Introduction

 

 

 

Spina bifida is seen in about 7 out of every 10,000 births in the U.S. Some mothers end the pregnancy before the baby is born if they find out that the baby has it. Others choose to have the baby.

 

About 70,000 people in the United States have this disorder. This class will teach you about the signs, problems and care of people with spina bifida.

 

 

 

The Signs

 

There are 3 kinds of this birth defect. They are:

 

 

Hidden. There is no hole or opening on the back. The spinal cord and nerves are usually normal but there are small spaces between a few of spine bones. Later in life, the person may have some small nerve problems.

 

Meningocele. This form is usually mild with no nerve damage or only small problems later in life. There is a sac that is pushed through the open part of the spine.

 

Myelomeningocele. This is the most severe form. The covering of the spinal cord and the nerves push out from the back. There is a lot of nerve damage and other problems occur.

 

It is found more with the children of white women rather than with black women and more with Hispanic women than non-Hispanic women. It is also found more with families that are poor.

 

The following groups are listed below from the most to the least risk of getting this disorder:

 

• Hispanic (most)
• White
• American Indian / Alaskan Native
• Black
• Asian / Pacific Islander (least)

 

It can lead to:

 

• learning problems because there may be a large amount of extra fluid around the brain;
• urinary problems and no control over urine;
• bowel problems and no control; and
• social problems.

 

What Causes It?

 

It can be caused by a number of things that happen to the child before they are born. Some of these things are:

 

• problems when the fetus’ nervous system is growing in the mother’s womb;
• the mother’s lack of vitamins, including vitamin B before the birth;
• the mother having diabetes;
• the mother taking some medicines, like those used for a seizure; 
• obesity of the mother; and
• fevers when the mother is still carrying the baby before it is born.

 

How Can It Be Prevented?

 

Taking vitamin B or folic acid during pregnancy can lower the rate of this disorder by about 70%. 400 micrograms should be taken every day even if the woman is not planning to have a baby. Those that have already had a baby with this disorder may have to take a larger dose like 4,000 micrograms of this vitamin B.

 

Caring for the Person With Spina Bifida

 

Good care of the child includes:

 

• keeping the child safe,
• teaching things in a slow manner,
• repeating things when needed,
• helping the person with their daily routines, like dressing and bathing,
• bowel and bladder programs,
• physical care of urinary and bowel needs (catheters, enemas, etc.)
• praise and rewards when the person does well.

 

 

These children often need the help of an occupational therapist and special teachers. Many are able to hold simple jobs and live alone in their own home or in a special group home when they get older.

 

Urine and Bowel Problems

 

Some children can get control with a good bowel and bladder training program. Other children may need medicine, a catheter (tube that is put into the bladder that empties urine) or surgery.

 

The person eat a diet with a good amount of fluid and fiber in it so that the stool can be better controlled. Extra fiber may also be given if needed. Some children will need help with the stool. Using the finger, a suppository and an enema may be needed.

 

Toilet training should begin when the child is able to sit and follow directions. This usually starts when the child is 2 or 3 years old but it could be later.

 

Bowel control happens before urine control, so it will help to start with bowel  training first. Here are some tips:

 

1. Keep a record of when the child goes for about 3 weeks so you can find out what is the natural time(s) for the child.
2. Place the child on the toilet 15-20 minutes after eating and at the time that you know the child usually goes.
3. Support the feet and teach the child to “grunt” and “bear down.”
4. Give the child praise.
5. Keep up regular toilet times.

 

Children are ready for urine training when they have:

• a good urinary stream,
• periods of dryness in between, and
• the “feeling” that they have to void.

 

Control will be poor and not good when the child does not feel the need to go and when they do not have any periods of dryness. There is no harm with trying anyway as long as it is positive.

 

Here are the steps:

 

1. Put the child on the toilet as soon as they wake up in the morning and after naps.
2. Put the child on the toilet every 2 hours when they are awake.
3. Give the child praise.

 

Catheters

A catheter may be needed if toilet training and timed toileting fail. These small plastic tubes are put into the bladder every 3 to 4 hours. Medicine to relax the bladder may be also needed in addition to the catheter when the child is not dry in between the catheter placement. Surgery may be needed if these things fail.

 

Learning Problems

 

Many children with spina bifida have excess fluid in their heads (hydrocephalus) so they may have some trouble with learning and in school. The parents and the school have to work very closely together in order to help the young child meet their learning needs.

 

Most children have an average I.Q. scores but some can have lower or higher scores. Some children may have a problem with vision, language skills, memory and attention.

 

Problems With Obesity

 

Obesity is the most common nutrition problem in North America. It is NOT good for health. It can lead to high blood pressure, diabetes, arthritis, heart disease, sleep apnea, and other problems. Almost ½ of children with spina bifida have a weight problem. This may be because they are not as mobile as others. They are not as active as other children.

 

Other children may treat children that are heavy in a very bad way.  The children may then get depressed and stay alone, rather than playing with friends. Children with spina bifida who are also “fat” have big problems with making and keeping friends. Their weight must be controlled. It also makes it harder for them to do things like walking and getting dressed in the morning.

 

The best way to prevent it is to help the child to see food as something that is needed for growth and health and NOT as a reward for doing something good.

They must learn about good foods and foods that are not good. Fruits and vegetables should be a very large part of what the child eats every day. Meals should be at the same time every day. Snacks and treats should not be used except once in a while.

 

Exercise and play are very good ways to control weight and to eat less.

 

Depression

Everyone feels sad, “blue” and unhappy at times. That is normal. But, everyone must see a doctor when these feelings do NOT go away or they stop a person from living a good life. 

 

The physical causes of depression must be looked first into when a person with spina bifida has depression. It may be that they have a problem with their shunt. An infection and a non-working shunt can lead to depression. Next, emotion support is given when any physical problems have been fixed.

Some of the signs for children are changes in:

 

• appetite,
• sleep patterns,
• school work,
• daily things like taking a bath, and
• their interest in certain things.

 

The child may not be sleeping. They may not want to eat. They may seem unhappy or restless. They may be doing things in a slow manner and they may do things like pace around the room and cry.

 

Some studies show that there is more depression among people with spina bifida than among those without it. They may have more feelings of helplessness and low self esteem.

 

Some of the things that can help the person are:

• exercise,
• medications, and
• counseling.

 

Problems with Walking

 

Children, like all people, like to be able to walk to get around. Problems with the hip, however, may prevent walking, especially as the person with spina bifida gets older.

 

These 4 hip functions are needed in order for a person to walk and walk well.

 

1. good line up of the hip and the trunk of the body
2. good range of motion of the hip and the spine
3. good control of hip joint and
4. the power of the person to go in a forward motion

 

Good line up of the hip is needed so that the center of gravity is in the middle of the body. This center is not in the middle and it may be toward one side or the other when the person has a bad line up of the hip. About 80% of spina bifida patients do NOT have good line up of the hip and spine so they will have a problem with walking.

 

The range of motion of the spine must be able to shift from one side to the other side when a person walks. Motion of the hip is the most important part of walking. The person will not be able to walk, or walk well, if this can not be done.

 

The child also has to be able to control the position of the hip. The number and strength of the hip muscles must be good enough for the person to walk. The person will not be able to control the hip when they have paralysis or no feeling in the hip. A moveable brace that crosses the hip joint may help.

 

The lower leg or calf muscles give the person the ability to go forward into the next step when they are walking. The hip muscles then pull them forward after the foot hits the floor. Both of these muscles must be in good shape for the person to be able to walk.

 

The child may be able to walk with extra training and/or a brace when these 4 things are present. Many, however, will have to use a wheelchair to get around when these 4 things are NOT present.

 

Problems with Dressing

 

Most people with spina bifida can get dressed but they may need some help. Some things that may help the person are below.

 

You should help the person to:

 

• Wear pull-on clothes that stretch and don't have any buttons or zippers
• Wear slip on shoes or shoes with Velcro rather than shoe laces
• Buy clothes that a larger size to make getting dressed a little easier.

 

A long-handled shoe horn can help if the person has problems reaching their feet. These can be bought at a home health care store or online.

 

Problems With Baths and the Toilet

 

Many people with spina bifida use special things in the bathroom to make baths and showers easier and more safe.

 

Some of these things are:

 

• A shower seat
• A shower wheelchair
• A commode chair has a cut-out seat and a pail or bucket underneath
• A high toilet seat that makes it easier to get up and down
• A special electric lift that helps people get lifted in and out of the tub with a cot like sling
• A transfer bench that is placed across the tub so a person can get onto the bench and then wash their body
• Grab bars that help with balance and safety
• Long handled sponges that are used to help reach the  back or feet for washing
• No skid bath mats and strips to prevent a slip and fall

 

These products have to be checked for latex since many people with spina bifida are allergic to latex.

 

Problems With Transfers

 

Some patients have trouble going from a chair, or wheelchair, to and from the bed or another chair. This is called a transfer.

 

Some can transfer by standing and turning on the legs. Others may use their arms to lift up and then move the lower part of the body.

 

Tell your patient that:

 

• There is no right or wrong way to do a transfer. Have the person find a way that is safe and works for them. In a safe transfer, the person must be able to keep their balance and protect themselves from an injury.
• Transfer boards and other special things can help

 

Shunts

 

A lot of children with spina bifida need a shunt to drain some of the extra fluid from their brains. A shunt is a tube that empties the fluid from the brain to another part of the body, like the belly.

 

Most are put in place a couple of days or weeks after a child is born. At times these shunts do not work in the right way and they have to be fixed or done over again. Some of the signs of it not working well are:

 

• Headache,
• Nausea,
• Vomiting,
• Seizure,
• Change in thinking,
• Back pain,
• Poor speech,
• Urine changes,
• Bowel changes, and
• Difficulty walking and getting around.

 

Infection can also happen. About 5-10% of people get a shunt infection after it is put in. Bacteria from the skin is the primary cause. The signs are:

 

• Fever,
• Stiff neck,
• Pain,
• Tender area,
• Redness and
• Drainage.

 

 

Puberty

 

Children with spina bifida often mature and reach puberty before other children. Normally, it begins between 8 and 12 years of age in girls and at 9 to14 years of age in boys. The girls are more likely to have precocious (early) puberty than other boys with spina bifida.

 

Summary

 

Caring for a person with spina bifida is very rewarding. If you would like to learn more, go online and do a search for more information.

 

Copyright © 2008 Alene Burke & Associates  

 

 

REFERENCES

 

Hockenberry, Marilyn J. and David Wilson. (2010).Wong's Essentials of Pediatric Nursing. 8th Edition. Elsevier Mosby.

Spina Bifida Association. (2008) http://www.spinabifidaassociation.org

Copyright © 2010 Alene Burke