Long term problems no one tell you about Spina bifida

Urine and kidney problems

Almost all patients with Spina Bifida will require lifelong antibiotics to prevent infection. Approximately 70% of all spina bifida patients will have to have some form of drug therapy later in life to try to control their bladder over-activity, and approximately 70% will have to practice clean intermittent catheterisation on a life long basis.

About 30% of Spina Bifida patients will not respond well to this treatment, continuing to wet or developing pressure effects on their kidneys. These children need major surgery to be carried at some stage during later childhood. This is usually between 7 and 10 years of age.

This surgery involves operations on the bladder. Often, the bladder is made larger so that it can hold more urine. To make passing a catheter into the bladder easier and to allow the children to catheterise themselves, the child’s appendix may be connected to the bladder and the other end brought out onto the skin. A catheter can then be passed through this several times each day to keep the child dry.

This type of surgery requires a commitment from the family and the child and considerable counselling and preparation. Constant and lifelong follow up is required following this sort of surgery. However, the results of this management are good. In practical terms, urinary continence is achieved in approximately 90% of patients and it is also possible to protect their kidneys from long-term damage and the consequences of that.

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Bowel problems

Most Spina Bifida children have some problem controlling their bowel movements. Constipation is the most common problem and can often be controlled by medicines, or failing this, suppositories. Sometimes enemas are required and take the form of a sachet of fluid given into the bottom.

If these treatments do not work it is possible to perform washouts of the bowel. If this is done once a day it may be possible for the child to be clean and avoid constipation. To be successful this technique requires co-operation from the child and so is usually not attempted until the child is old enough to understand the benefits and is motivated to co-operate. Parents can be taught the washout technique along with their child.

The washouts may be made more acceptable and easier by the ACE operation (Antegrade Continence Enema). In this operation the appendix is brought to the surface as a small opening on the skin. This does not leak bowel content but allows the parent of child to pass a catheter into the bowel once a day to do the washout.

In some children none of the above techniques work well. In this situation a colostomy can be formed so that all the bowel content drains into a bag on the tummy.

Hydrocephalus surgery

If a shunt has been inserted it can become blocked. This occurs in about 50% of shunts by 2 years. Sometimes it is associated with infection inside, but mostly it occurs on its own. More frequently the ventricular catheter is blocked rather than the peritoneal catheter. Sometimes the valve functions badly, though this is less common.

Blocked shunts usually require a revision operation. Although revision operations carry a slightly higher risk, both of bleeding and of infection, mostly they are uneventful. Shunts do not need routine lengthening, as sufficient tubing to allow for growth is implanted when they are first inserted. Very rarely, they need to be implanted in a cavity other than the abdomen. Once a child has a shunt it is usually needed for life.

Muscles and movement

Careful orthopaedic follow-up of Spina Bifida patients is required. Although the amount of movement and strength that the child has in the legs does not tend to change, increasing weight of the child may cause progressive problems with walking. Also the action of tendons may not be balanced and result in joint deformities. This is due to some muscles working better than others and tending to pull the joint out of shape. Operations may be needed on the foot, ankle, knee or hip muscles or on the joints themselves.

Children who have movement of the knee or foot should be able to walk. In mild cases walking may be possible unaided. In other children orthoses (splints) or calipers (support rods connected to the shoe on either side of the leg) may be needed. More severely affected children may require a wheelchair. Even those children who can walk with calipers may prefer to use a wheel chair when they are older.

Sensation

Just as the nerves to the leg muscles, bladder and so on, may be affected in Spina Bifida so are the nerves to the skin. This means that there may be areas of numbness in the legs. The extent of the numbness depends on the level of Spina Bifida. In some children only the feet are affected but in others this may extend to the level of the knees or hip. The skin of affected areas tends to be cold and is prone to damage from pressure sores or undetected injury. Care and protection of the skin of these areas may be needed.

Intellect and education

Around 75% of children with Spina Bifida have some learning difficulties. The most common problems are concentration, short-term memory, organisational skills, hand/eye coordination, and motivation. Most children can go to a normal school. Some need a special school but this is usually because of the facilities required for their physical difficulties. In adult life many people with Spina Bifida find employment, drive a car and are self-sufficient.

Sexual function

Early puberty is common although the reasons for this are not understood. Fertility is normal and many women with Spina Bifida have families. Although sensation can be affected, both sexes can enjoy a healthy sex life.

Emotional and family support

Spina Bifida will obviously have considerable emotional effects on both the affected person and their family. Counselling and support may be needed. Financial help is also available through Social Services for children with Spina Bifida and their families.

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