Cerebral Palsy (cont.)
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Cerebral Palsy Prognosis
With proper therapy, many people with cerebral palsy can lead near-normal lives. Even those with very severe disabilities can improve their condition significantly, although they will never be able to live independently.
Approximately 25% of children with cerebral palsy have mild involvement with few or no limitations in walking, self-care, and other activities. Approximately half are moderately impaired to the extent that complete independence is unlikely but function is satisfactory. Only 25% are so severely disabled that they require extensive care and are unable to walk.
Of the 75% of children with cerebral palsy who are eventually able to walk, many rely on assistive equipment. The ability to sit unsupported may be a good predictor of whether a child will walk. Many children who can sit unsupported by age 2 years eventually will be able to walk, while those who cannot sit unsupported by age 4 years probably will not walk. These children will use wheelchairs to move around.
The likelihood of medical complications of cerebral palsy is related to the severity of the condition. Generally, the more severe the CP, the more likely are related conditions such as seizures and mental retardation. Individuals with quadriplegia are much more likely than those with diplegia or hemiplegia to have these related conditions.
Life expectancy in people with cerebral palsy also is related to the severity of their condition. People with milder forms of cerebral palsy have the same life expectancy as the general population. Those with severe forms of cerebral palsy typically have a shorter life span, especially if they have many medical complications.
With the advances in medical care and the awareness that children with cerebral palsy merit aggressive treatment of any acute condition that is treatable, the average life expectancy has increased. As a result, it is not unusual to see adults, even those with severe forms of cerebral palsy, reaching 50 and even the 60 years of age.
Adults with cerebral palsy are likely dependent on others for activities of daily living and in need of continuous support. The parents may be no longer alive or with limitations in the ability of providing support. Unfortunately, at the present time there are very few medical services that are oriented to treat adults with cerebral palsy. Historically, cerebral palsy has been a condition of children, however, at the present time there is a sizable and growing number of adults with cerebral palsy. In addition, there are few internists or general practitioners with expertise in CP. Just recently a few academic adult hospitals offer formal training positions in the area of developmental disabilities. These adults with cerebral palsy need strong advocacy to guarantee the services they need.
Some studies have found that abnormalities of muscle tone or movement in the first several weeks or months after birth may gradually improve over the first years of life. In one study, almost 50% of very young infants thought to have cerebral palsy and 66% of those thought to have spastic diplegia "outgrew" these signs of cerebral palsy by age 7 years. Many children do not manifest full motor signs that are suggestive of cerebral palsy until aged 1 to 2 years. Thus, some propose that the diagnosis of cerebral palsy should be deferred until the child is aged 2 years.
End of Life Issues
Counseling and advice is very important when individuals with cerebral palsy present with serious medical conditions. Unfortunately, some people will make decisions believing that persons with cerebral palsy have "a poor quality of life" to start with. This approach is very dangerous since it leads to the limitation of medical services offered to the person. In some instances it is appropriate to limit some medical options. For example, a person with severe scoliosis with distortions in the shape of the thorax may not be a good candidate for cardiorespiratory resuscitation because it could result in rib fractures and, in the end, it will be ineffective. Hospice care may be appropriate for a person with a terminal disease that has no treatment. However, certain medical conditions including pneumonia, sepsis, and cardiac insufficiency, can be treated. In these instances, the decision to treat or not to treat should not include as a factor the fact that the individual has cerebral palsy or cognitive deficiencies.
Norberto Alvarez, MD
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