Most children with cerebral palsy can live long, happy, quality lives. Admittedly, their care may involve more visits to the doctor, require therapy or medications, and perhaps surgery. They may be evaluated for early intervention, special education services and assistive technology. The severity level, as well as improper management of his or her conditions, may put the child at risk for diminished life span.
About life expectancy
Most children with cerebral palsy can live long, happy, quality lives. Admittedly, their care may involve more visits to health care practitioners, require therapy or medications, and perhaps surgery at some point. They may be evaluated for special education assistance and require assistive technology devices and services, but a child’s physical impairment, in general, will not limit his or her life span. However, the severity level of the child’s condition, as well as improper management of his or her symptoms, may put the child at risk for diminished life expectancy. Research indicates properly managing a child’s health status may assist in optimizing life span.
Cerebral palsy, in itself, is a condition that does not progress. This means the one-time injury to the brain, which is responsible for the cerebral palsy and the resulting mobility impairment, will not worsen or change over time. However, other health issues, known as associate conditions and co-mitigating factors, are not caused by the same brain injury, and may change over time. Depending on severity and management practices, these conditions may change over time and can have an impact – for better or worse – on overall health status and life expectancy. Conditions found commonly with cerebral palsy include cognitive impairment, feeding difficulties, seizure activity, vision impairment, and hearing impairment.
Sometimes, a newborn will pass at or soon after the time of birth, leaving parents devastated and wondering how or if they might have prevented the child’s death. With advancement of technology and science, more babies are indeed surviving at birth, when previously they would not, but some have severe outcomes. Sometimes the brain injury is too severe and presents a life-threatening, unavoidable situation, while other times a different set of circumstances, such as low birth weight and prematurity, may have caused the child’s death, not cerebral palsy. Many reasons for premature death exist.
The majority of children with cerebral palsy are diagnosed within the first 3-5 years of life. Once diagnosed, focus is placed on managing the child’s physical impairments and overall health. For instance, a child with cerebral palsy may have oral motor dysfunction, meaning facial muscles are impaired and hence, chewing and swallowing are more difficult. This, in itself, is not necessarily a life-threatening condition. If the child chokes or aspirates due to the swallowing difficulty, however, they are at greater risk for contracting pneumonia and infections. These conditions are serious and must be managed properly to optimize the child’s health status.
None of these, or any other factors, guarantee a shortened life expectancy, instead a call for proper management of health conditions. Children with severe cerebral palsy and a number of co-mitigating factors, have been known to live a near-normal life span. Every situation is unique and dependent upon many factors.
Goals for optimizing life expectancy outcomes
Healthcare professionals, parents and caregivers may play the most important role in reducing risk factors for diminished life expectancy. Parents and caregivers spend the most time with the child, know his or her everyday needs, and seek options on how best to fulfill the needs. Parents and caregivers can also assist the primary care physician in identifying, tracking and recording a child’s condition, progress, and areas of concern. The use of a care plan can help parents and caregivers identify goals, implement treatment plans, and maintain records.
Every child’s condition is unique, and primary care physicians, therefore, evaluate and prioritize goals and treatment based on the individual – not the dysfunction. Parents and caregivers can take certain common steps to optimize the child’s care and quality-of-life.
- Set and commit to treatment goals with the child’s primary care physician.
- Begin treatment and therapy as soon as possible; early intervention can improve outcome.
- Be aware. Life-threatening complications can develop any time, but awareness allows caregivers to recognize and minimize these factors, act promptly and seek assistance when necessary.
General care plan goals to optimize life expectancy and manage cerebral palsy include:
- Optimize mobility
- Manage primary conditions
- Control pain
- Prevent and manage complications, associative conditions and co-mitigating factors
- Maximize independence
- Enhance social and peer interactions
- Foster self-care
- Maximize communication
- Maximize learning potential
- Enhance quality-of-life
Actively seek solutions to health symptoms, especially:
- Cognitive functioning
- Vision impairment
- Hearing impairment
- Respiratory functioning
A child with cerebral palsy may require a higher level of care than a child without impairments but the child with disability may still lead a very long, happy, and high-quality life. Parents are advised, whenever possible, to embrace life with cerebral palsy in it, and to seek opportunities for assistance and learning. Over 50 million individuals with disability were living in the United States in 2004. Creating a care plan, finding perspective for coping strategies, and making life’s journey enjoyable will help parent and child alike. Part of raising a child with cerebral palsy is teaching the child, and learning from him or her in return.
About life expectancy calculations
Life expectancy is a calculation of an average survival time of a certain population of individuals with similar conditions. It is an estimate based on historical and scientific data. It is not the actual time an individual will survive. Any individual can survive much longer, or much shorter, than a life expectancy estimation. This is an important distinction.
There are two main purposes in estimating the life expectancy of an individual with cerebral palsy. First, to answer a parent’s question “Is my child going to survive? And, how long?” The parent wants to know the prospects for survival of their child given their health status. Days? Weeks? Years? A limited life? A full life? Skilled medical practitioners typically provide parents with an answer to life expectancy in this scenario.
Other purposes for calculating life expectancy involve estimating damages or future expenses. When in the process of seeking compensation through lifetime benefits for medical malpractice, or in planning for the future financial needs of the child, life expectancy calculation is used as an assessment of economic damages, or anticipated expenses. An actuary, a person skilled in estimating the financial impact of complex risk and uncertainty, analyzes a myriad of factors from science and research to provide an estimation of life expectancy that is then used to calculate future financial costs associated with the child’s care. In the end, it is an estimation based on available scientific data and medical research.
Life expectancy is a measure of the risk of death occurring. It is the average number of years an individual is expected to live, but only if current mortality factors continue to apply. Mortality rates are declining due to science and technology. They are based on a set of factors, but those factors may change over time, or other factors may enter a child’s life which may then alter the original calculation. Cerebral palsy, after all, is a health condition that does not affect every individual in the same way.
As in the general population, life’s journey is not guaranteed a standard path. Every person is expected to pass, it is just not precisely known from what cause, and when. Life expectancy cannot be accurately predicted, only estimated. Estimations are primarily used for planning future care and expenses.