Although many parents worry that their child’s CP may shorten their life expectancy, medical professionals now believe that the majority of children with CP can have a life expectancy similar to that of the general population.
In determining a specific child’s life expectancy, medical providers consider factors such as:
- The severity of the cerebral palsy
- Additional medical conditions, such as a brain injury or other severe disabilities
- The available resources, like physical therapy, for the child
- Any available financial aid or support
According to a study out of the United Kingdom, cerebral palsy is diagnosed in 2 to 2.5 children per 1,000 live births, making it the most common severe disability that children face today.
Does cerebral palsy get worse over time?
It is important to note that a patient’s prognosis may correlate with their life expectancy. A medical provider gives parents a prognosis estimating the likely course of the disease over time. A poor prognosis may suggest that a child will have a shorter life expectancy due to cerebral palsy.
However, while cerebral palsy is permanent and incurable, it is not progressive. Since the condition isn’t progressive, it won’t worsen over time. That being said, the exact symptoms of cerebral palsy can change over time, which may make it seem as if it’s progressing or regressing.
A few things could impact the health and wellness of a person living with CP. Motor and intellectual impairments can impact children and adults with cerebral palsy in a number of ways, potentially causing:
- Premature aging
- Mental health disorders
- Challenges finding work or working with others in a workplace
- Post-impairment syndrome
- Walking or swallowing disorders
Post-impairment syndrome may make it seem like cerebral palsy is getting worse. Post-impairment syndrome is relatively common among those with cerebral palsy and occurs when you repeatedly “max out” your body’s energy stores. This syndrome essentially drains the body’s battery down to 1% over and over again while never allowing it to recharge fully.
For someone with cerebral palsy, post-impairment syndrome could occur after everyday tasks such as sweeping the floor or climbing the stairs. If this burden on the body continues, the increased use of energy can lead to additional pain and discomfort. Continued issues may lead to complications.
Symptoms of cerebral palsy that may flare due to post-impairment syndrome include:
- Stiff muscles
- Scissor-like movements of the legs
- Trouble swallowing
- Floppy limbs
- Twitching of the tongue or face
- Loss of muscle tone
Additionally, people living with cerebral palsy may show signs of premature aging by the time they reach the age of 40. Premature aging is partially due to the fact that people with cerebral palsy may use anywhere from three to five times more energy than others doing the same tasks. Without proper attention and care, the demand on the body starts to break down the bones and muscles over time. It’s not uncommon to see someone with cerebral palsy develop overuse injuries in the joints or osteoarthritis throughout the body.
Essentially, it’s possible for cerebral palsy to compromise the way the body works and moves. As a result, people with cerebral palsy may feel that the condition is getting worse despite it not being progressive.
Common Factors That Affect the Life Expectancy of a Child with Cerebral Palsy
Factors that impact the life expectancy of a child who has cerebral palsy include:
- Cognitive issues
- Visual disabilities
- Motor issues, both manual and ambulatory
For each category, a medical professional must assess the severity of the injury before they can determine how it will contribute to the overall life expectancy of the child.
In one study of children with cerebral palsy in California, researchers found that a child who had the ability to feed themselves and use gross motor skills had a higher probability of survival over time.
There are other factors that may play a role in determining a child’s life expectancy, including:
Approximately 42% of children with cerebral palsy have epilepsy, according to a 2010 report from the ADDM CP Network. Cerebral palsy is linked to a higher risk of developing epilepsy, with spastic tetraplegia being the most common form of cerebral palsy linked to seizures.
It’s most typical for a child with cerebral palsy to have early-onset seizures within their first year of life, but they can also start later in life. In one study, researchers noted that the majority of children suffered from generalized tonic-clonic seizures rather than other forms. Unfortunately, this also means that many children with CP need long-term anticonvulsant medications.
Children with cerebral palsy commonly have issues with swallowing and feeding. Swallowing and feeding problems increase the risk of aspiration with oral feeding, which can have significant pulmonary consequences.
Difficulty eating may also lead to dehydration or malnutrition, and stress during mealtimes can necessitate GI tubes to prevent aspiration. Children with more limitations in motor function and feeding skills have lower life expectancies on average.
A study published in Developmental Medicine & Child Neurology revealed that “4-year-old children who did not lift their heads in the prone position and were tube fed lived to age 10.9 years [in 1983]. By 2010, the median age at death had increased to 17.1 years.”
Respiratory function plays a role in the reduced life expectancies for children with cerebral palsy. In fact, respiratory illness is the most common cause of mortality among severely affected children.
It’s normal for children with cerebral palsy to have a common cough or wheeze during normal daily activities. They may also cough when drinking or have obstructive sleep apnea. Children with cerebral palsy have a greater risk of sudden death while sleeping.
The majority of children with cerebral palsy also have respiratory problems such as chronic bronchitis, respiratory insufficiency, pneumonia, and recurrent aspiration. Of the above issues, pneumonia is potentially a disproportionate cause of mortality among children. Some data goes as far as to suggest that pneumonia is responsible for around 40% of all cerebral palsy deaths.
Some of the most common co-conditions found alongside cerebral palsy include depression and anxiety. A 2020 study found that adults living with cerebral palsy had a marked increase in levels of depression and anxiety. For children, around 46% reported having anxiety.
Unfortunately, around half of children with cerebral palsy have mental health problems, and two-thirds of those have behaviors that interfere with their lives. Mental impairments can prevent a person with CP from adapting to new or unexpected situations. They may be less able to handle change, problems, or stress and could have depression linked to fatigue.
Physical & Mobility Impairments
Cerebral palsy affects mobility because it causes impaired muscle tone and movement. Mobility impairments may be permanent or temporary, but severe mobility impairments are more likely to lead to mortality.
Mobility and physical impairments may lead to flaccid or spastic muscles. It’s typical for a person with CP to have involuntary movements, poor posture, poor coordination, impaired reflexes, and impaired balance.
For children with physical and mobility impairments from CP, the survival rate is good with mild or moderate disability. However, survival decreases as the impairments increase. For example, a child who can walk with medical aids has a higher life expectancy than a child who requires a wheelchair that must be operated by others.
Life Expectancy for Mild Cerebral Palsy
Children with cerebral palsy have different life expectancies based on the severity of their conditions. It’s most often seen that abnormalities of the brain leading to seizures, breathing issues, and other severe health issues are more likely than mobility problems to decrease life expectancy.
Mild cerebral palsy doesn’t typically have a significant impact on a child’s overall life expectancy. Children with mild CP generally have life expectancies comparable to those of the general population. The condition is not progressive, so it is sometimes the case that children with mild CP can live a relatively normal life with the help of physical therapy, medications, and other interventions.
A study from 2006 found that children with severe cerebral palsy have only around a 40% chance of living to the age of 20, but children with mild cerebral palsy have a chance of around 99%.
Life Expectancy for Severe Cerebral Palsy
Children with severe cerebral palsy are more likely to pass away prematurely from complications related to the condition. The prognosis for children with acute CP is significantly worse than for those who have mild or moderate forms of the condition because of a greater risk of pneumonia, severe brain injury, and other acute issues.
In a previously mentioned study, researchers found that children with severe cases of cerebral palsy at the age of two have roughly a 40% chance of living to the age of 20. Those facing problems with feeding or mobility have a greater risk of early mortality. Also, those with feeding issues may have a greater risk of developing pneumonia, which could be responsible for as many as 40% of all cerebral palsy deaths.
Medical intervention and support can improve the chances of living for longer, even in acute cases.
Common Causes of Death for People with Cerebral Palsy
Cerebral palsy is a varied condition with several common causes of early death. Whether living with mild, moderate, or severe CP, children may die early from conditions such as:
- Congenital malformation
- Respiratory diseases such as pneumonia
A 2019 study from Australia concluded that mortality was the highest among children within the first five years of life, especially when severe or profound intellectual disabilities were present. Those disabilities were, according to the study’s findings, the most significant predictors of death. Severe motor impairment was the next strongest single predictor of a child’s mortality risk.
It is possible that the specific symptoms a child lives with could lead to mortality. For example, a severe seizure could stop a child’s breathing long enough to result in death, or aspiration could lead to suffocation or pneumonia. Close monitoring and early treatment are needed for children with conditions that make them prone to these life-threatening events.
Lifetime Cost of Caring for Child With Cerebral Palsy
The cost of caring for a child with cerebral palsy over their lifetime is close to $1 million. According to the Centers for Disease Control and Prevention, among all children enrolled in Medicaid in the United States in 2005, those with cerebral palsy had medical costs roughly 10 times higher than children without intellectual disabilities or cerebral palsy. For those who had intellectual disabilities along with their cerebral palsy, medical expenses were as much as 26 times greater than for children without either intellectual disabilities or CP.
How to Improve Quality of Life for Children with Cerebral Palsy
It is important to take steps to improve the quality of life for children who are living with cerebral palsy. Many, especially those with mild CP, can live relatively typical lives with some general support.
Caretakers may want to consider working with a medical team to help manage symptoms, especially while they are still learning to recognize them. There are also different treatment options for children with cerebral palsy.
The treatments available to a child with cerebral palsy depend on their symptoms and the severity of their condition. Some possible treatment options include:
- Medical care for surgery
- Physical, speech and language, occupational, and recreational therapies
- The use of medical devices, such as walkers, scooters, and wheelchairs
- Medications for pain or epilepsy
- Mental health support, such as animal-assisted therapy or music therapy
- Computers and software for specialized learning and communication