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.
Eight Factors Affecting Life Span in children with Cerebral Palsy
Predicting how life span is altered by a medical condition is nearly impossible, although it is of great concern to parents. Doctors often aren’t able to immediately diagnose cerebral palsy in newborns, and even when they can, it typically takes months to years to accurately assess the level and extent of impairment a child will experience.
For an accurate estimation, primary care physicians wait for the brain to fully develop, observe the child over time and gauge key developmental milestones.
Therapy, treatment, and technology continue to advance in ways that minimize effects of impairment, while worldwide and national policy initiatives focus on ensuring barrier-free, accessible environments in home, school, transportation, recreation, government, and public space.
Although it may be difficult to determine a prognosis for a child with cerebral palsy, setting goals in cooperation with the child’s doctors and learning to properly manage impairment, associated conditions, and co-mitigating factors can improve outcomes.
Still, none of these factors indicate how a person’s life span will be affected. The majority of individuals with cerebral palsy live until late adulthood. However, while some individuals with severe impairments may live a long time, the more severe the impairment and the greater number of health conditions, the higher the likelihood of a shorter life span.
Properly managing these conditions will help minimize risk and optimize life expectancy. In particular, eight factors are identified as areas of concern which have the capacity to shorten life span in cases of cerebral palsy. They are:
Number of impairments and key disabilities
An increase in the number of impairments has an adverse effect on life expectancy calculations for individuals living with cerebral palsy. To clarify, the higher the number of impairments, the greater likelihood an individual’s life expectancy will be impacted. However, severity and type of impairment also play a significant role. A child with multiple impairments has multiple conditions for caretakers to properly manage.
Life span can be affected as a direct result of cerebral palsy, or by a function of the individual’s associated conditions – such as seizures and intellectual disabilities.
The degree that impairment influences a person’s life is a significant component in life expectancy calculations. Severe impairment will diminish the life expectancy of a child more significantly than moderate or mild impairment. Higher levels of impairment can indicate a more serious underlying injury or condition – more significant brain damage, for instance.
Severe cases of cerebral palsy can lead to early death in newborns, babies, infants, and toddlers. The more severe a condition, the more prone the child is to premature death. Of special concern for risk of premature death are children who experience severe spasticity, and children with quadriplegia or quadriparesis. Those born with jaundice are also at risk. Many cases of infant mortality are related to premature birth and very low birth weight. Studies are being performed to ascertain whether the brain damage lead to premature birth and low birth weight, or whether the reverse lead to the brain damage. In these situations, though, the injury to the brain or other organs may be too great to sustain life.
Those whose impairments that induce a near-vegetative state are more prone to respiratory infection, septicemia and general organ failure, conditions which all place life at greater risk. Severity of impairment is significant when it influences mobility, feeding, and cognitive functioning.
Severe impairment can lead to other conditions. For example, severe spasticity in limbs can lead to contracture and frozen joints. Severe impairment often increases a child’s dependency on others; he or she may require 24-hour care and monitoring. The inability to be independent, provide self-care, and be mobile is thought to contribute to quality of life issues and life span, but not in all cases. Those with severe impairment can lead healthy lives well into adulthood.
Health management, modern medicine, preventive measures, and technological advances continue to optimize health outcomes of those with severe impairment.
The severity of mobility impairment is an important factor in gauging the impact on a child’s lifespan. Limited ability to move from one place to another, or to use both arms and legs successfully, increases a child’s dependency upon others. Severe impairment, especially quadriplegia – paralysis of all limbs and torso – is a concern.
Restrictions on mobility increase a child’s dependence on caregivers. It can also lead to other health problems, which also impact quality-of-life and life span.
Cerebral palsy is a condition that does not progress in severity; which means the brain injury does not deteriorate over time. However, in some children, the effects of the brain injury on a child’s mobility can worsen – or improve, with treatment -over time.
Spasticity can force limbs into a constantly extended or flexed state, cause contracture and impede normal alignment of the spine and hips, which further impairs movement. Pressure sores may develop when individuals are restricted to bed or sitting positions for extended periods. Pressure sores can become infected, and untreated infection places a strain on the body and can be life threatening.
Those with physical impairment can also experience premature aging. Inactivity and lack of exercise can weaken the body and decrease immunity and cognitive function. Some children with cerebral palsy will use more energy to move than a child without cerebral palsy. The result is excessive wear on internal organs, including the heart.
In general, the lack of upper extremity function, inability to propel wheelchair, inability to roll over, and inability to creep, crawl or scoot can be areas of concern.
Children who are able to self-feed are more likely to experience a full life than children who need assistance with feeding. Difficulty in feeding can lead to malnutrition, a condition that weakens the immune system and can lead to muscle deterioration.
Children who are unable to self-feed are reliant on their caregivers, medical equipment, or both. They are likely to have oral motor functioning impairment, meaning muscles required to chew, swallow and communicate are unable to function properly. This impairment can lead to failure to thrive, choking, and aspiration, which then can cause pneumonia or other life-threatening conditions. Irritation from feeding tubes can lead to infections. Infections are serious if not treated carefully.
Feeding issues can be mitigated by properly using feeding tubes or gastrostomy. Parents can work closely with a registered dietician to manage the nutritious value, consistency and substance of diet, and learn ways to feed that reduce the child’s risk of aspiration and pneumonia. Maintaining a healthy diet and weight optimizes health. Therapists may also work with the child to improve muscle control of the tongue, lips and bite.
Children who experience seizures, especially severe and frequent seizures, in addition to cerebral palsy are at risk for diminished life expectancy when compared to children who are without seizure. Seizures originate in the brain, but are not the result of the same brain injury that caused cerebral palsy.
Seizures may affect consciousness, emotions, sensation, vision, and muscle control. Repeated or prolonged seizures may lead to injury or severe lack of oxygen.
With the aid of a neurologist, parents can learn how to manage and properly medicate seizure activity. Medications must be monitored and changed often. The manner of weaning from one medication and replacing with another is extremely important with some medications. Care must be taken to prevent adverse drug interventions, especially when new medications are prescribed by other doctors.
When meeting to discuss the child’s seizures with medical practitioners, parents will need to provide information about how long the episodes typically last, what body parts are affected, the type of seizure, possible triggers, and how the child behaved during the seizure.
Intellectual capability has a strong relationship to the life expectancy of a child with cerebral palsy. Even in children who do not have cerebral palsy, diminished intellectual function will shorten life expectancy calculation. Intellectual disability occurs in roughly 30%-50% of children with cerebral palsy. Cognitive factors that contribute to diminished life span include:
- Presence and severity of intellectual disability
- Inability to speak intelligible words
- Inability to recognize voices
- Inability to interact with peers
It is unclear whether reduced cognitive function itself is the cause of diminished life expectancy, or the sign of a more severe level of impairment.
Impaired visual function is linked to diminished life span in children with cerebral palsy. Current studies are focused on determining whether the actual visual impairment is responsible for shortened life expectancy, or whether visual impairment is indicative of a separate brain injury that may be life threatening in itself. Some believe visual impairment may accompany severe cases of cerebral palsy, which combined might indicate a risk to life expectancy.
Respiratory functioning, as well as swallowing and chewing difficulties, is a factor in reduced life expectancy for children with cerebral palsy. Respiratory distress makes it difficult for the body to function and can lead to life-threatening heart conditions. Severity and frequency of respiratory infection is a significant factor.
Difficulty in swallowing and feeding can lead to the inhalation of food particles. This can cause infection in the lungs or pneumonia, which are also of concern.