Learning that your child has cerebral palsy can be devastating news. Yet, by educating yourself, including information about treatment options and how to help manage the disorder, your child can still lead a productive life.
What is Cerebral Palsy?
Cerebral palsy (CP) is a neurological disorder that affects a child’s movement, motor skills, and muscle tone. In most cases, cerebral palsy is caused by brain damage that develops while the baby is still in utero or during or shortly after birth.
CP is an “umbrella term,” meaning that it refers to a group of disorders that can affect a person’s movements. While one child with cerebral palsy may up end developing a certain disorder, another child with cerebral palsy may not.
Cerebral palsy is also a congenital disorder, affecting around 500,000 people in the U.S. There is currently no cure for the disorder, but there are numerous treatment options that can help babies and children live quality lives that turn into successful adult lives.
CP can lead a number of other medical conditions, depending on the severity of the disorder. Other medical issues can include:
- Speech problems
- Learning disabilities
- Problems with hearing and vision
- Emotional issues
Types of Cerebral Palsy
The severity and type of cerebral palsy a child has can vary. Some children could experience spasms only, while others are unable to walk. Some may have seizures and some may have cognitive disabilities. The condition can affect any muscles in the body, so possible complications could also include trouble with balance, eye problems, bladder or bowel problems, poor range of motion in joints, and difficulty swallowing. Cerebral palsy does not get worse with time.
There are different types of cerebral palsy that affects babies and children in different ways:
Spastic Cerebral Palsy
Spastic cerebral palsy is the most common type of the disorder, affecting around 76.9% of all people with CP. Spastic cerebral palsy differs from other types of CP due to it distinct symptoms and characteristics. Common symptoms and characteristics of spastic CP include:
- Failure to reach milestones in walking, crawling, and sitting up
- Abnormal movement
- Movement inhibition
- Stiff muscles
- Muscles tend to become stiffer the more the child moves
- Difficulties with controlling individual muscles
- Difficulties moving from one position to another
Spastic quadriplegia is the most severe form of spastic CP. This type of cerebral palsy can affect a child’s entire body, placing them at risk of limb deformities. Many children with spastic quadriplegia will also experience chronic seizures, so it’s important to work with a healthcare team to figure out the best treatment options.
Another form of spastic CP is spastic diplegia. It’s not as severe as spastic quadriplegia, as children are still able to walk. However, they often walk on their toes and have issues with balance and coordination. Other symptoms of spastic diplegia include delayed milestones, fatigue, seizures, “flexed knees,” and a crouched gait. Legs are often affected more than arms.
Dyskinetic Cerebral Palsy
Dyskinetic cerebral palsy (also known as dystonic and athetoid) is the 2nd most common form of cerebral palsy, although it only affects around 2.6% of all cases of the disorder. Symptoms of dyskinetic cerebral palsy include:
- Repetitive, twisting motions (dystonia)
- Slow, writhing movements (athetosis)
- Unpredictable, irregular movements (chorea)
- Awkward posture
- Movements can range from slow to rapid and can be accompanied by pain
Ataxic Cerebral Palsy
Ataxic cerebral palsy is named after the word ataxia, meaning “without order.” It’s the least common type of cerebral palsy, marked by poor balance, incoordination, tremors, and shaky movements.
Mixed Cerebral Palsy
Mixed cerebral occurs when the child has two or more types of the aforementioned types of cerebral palsy. Spastic-dyskinetic cerebral is the most common type of mixed cerebral palsy. When children have mixed cerebral palsy, they may exhibit a combination of symptoms, matching each type of the disorder they have.
What If I Notice Symptoms of Cerebral Palsy in My Child?
If you see obvious symptoms of cerebral palsy, you should consult your child’s pediatrician right away. Even if you notice things that might not be the more obvious signs of cerebral palsy (such as muscle spasms, stiff muscles, and abnormal movements), you should always take your concerns to your child’s doctor. Early intervention is key when helping children with cerebral palsy.
Also keep in mind that there is no need to panic. In some cases, it will turn out that the child doesn’t have CP. In other instances, parental instincts are spot-on, and treatment can begin shortly after.
What Causes Cerebral Palsy?
Sometimes the cause of cerebral palsy is unknown. However, research indicates that the disorder can be caused during pregnancy when the baby’s brain fails to develop correctly or gets damaged. Brain damage can occur from maternal illnesses and diseases, genetic factors, or using illegal drugs while pregnant.
Cerebral palsy can also happen during childbirth. Infants born too early are at risk of developing the disorder. Premature infants run the risk of oxygen loss and a host of other medical issues that can lead to brain damage, which may eventually lead to cerebral palsy.
CP doesn’t always occur during pregnancy or childbirth. For instance, an accident during childhood can lead to brain damage and cerebral palsy. Additionally, babies or toddlers may develop a severe medical condition, such as meningitis, that can lead to the disorder.
Another possible cause of cerebral palsy is brain damage caused by medical negligence. When a baby is deprived of oxygen during birth, the damage can be severe enough to cause cerebral palsy. Improper use of forceps and other tools during delivery can also cause damage.
A doctor may also be at fault for failing to do something, like delaying a Cesarean section or failing to perform one altogether, not properly monitoring the health of the fetus, or not detecting and treating infections. Many parents have started lawsuits against doctors and hospitals when negligence was suspected in a cerebral palsy case.
Is Cerebral Palsy a Disease?
No, cerebral palsy isn’t a disease. As aforementioned, it’s a neurological disorder which affects movement and muscle control. Cerebral refers to the brain and palsy refers to movement.
Will My Child Have an Intellectual Impairment?
There’s a huge misconception that all children with cerebral palsy are intellectually impaired. Not only is this myth untrue, but many children with cerebral palsy have above average intelligence. There are doctors, attorneys, teachers, and more, who live with cerebral palsy yet carry out demanding careers. Remember, the part of the brain that’s damaged is the part that controls movement only.
Some children, however, will develop some form of cognitive impairment, due to the injury that caused CP in the first place. The National Institute of Neurological Disorders and Stroke (NINDS) reports that around 2/3 of all people with cerebral palsy have some form of intellectual impairment. The degree of the impairment depends on individual circumstances. Healthcare professionals will be able to work with your child to determine what level, if any, of cognitive impairment exists.
How is Cerebral Palsy Diagnosed?
In many instances, cerebral palsy isn’t diagnosed until the child reaches the age of walking and talking. If parents suspect a problem with lack of muscle control and coordination, they’ll usually find out from the child’s physician if he/she has cerebral palsy.
In other instances, especially if a baby is born prematurely or has a heightened risk of developing the disorder, there is a chance that the infant will get a diagnose in the first few months of life.
When diagnosing cerebral palsy, doctors look for poor coordination skills, spastic movements, uncontrolled muscle movements. Based upon a muscle movement test and the child’s medical history and a physical exam, a doctor will be able to ascertain whether your child has cerebral palsy or not.
Physicians will also perform development screenings on the infant or child. A development screening test will allow doctors to see if the patient has motor movement delays or any other type of developmental delays.
It’s important to remember that diagnosing cerebral palsy is not done in one day. It will take time to get a proper diagnosis, although premature infants may get a quicker diagnosis than a toddler.
Can Cerebral Palsy Be Prevented?
Most cases of cerebral palsy cannot be prevented because most causes of the disorder are still unknown. However, there are always steps you can take while pregnant to help lower your risk of having a baby with cerebral palsy.
If you’re not pregnant yet, make sure you’re eating healthy, wholesome foods and that any pre-existing medical problems are under control. If you’re already pregnant, it’s crucial to continue to eat healthy while taking prenatal vitamins and avoiding drinking alcohol and smoking.
Unfortunately, no one knows when an infant will suffer brain damage at the hands of a physician. As mentioned earlier, pulling too hard on an infant, especially while using birth-assisting tools (forceps) can result in severe injuries, including brain damage.
On the other hand, infants who are not pulled out in time during childbirth run the risk of being deprived of oxygen, so doctors must extremely careful not only when pulling the infant out, but ensuring the infant doesn’t get hurt when a quick delivery is needed.
Sometimes an emergency C-section is needed if an infant is not progressing as he/she should during a normal delivery. If the C-section isn’t ordered and carried out in time, the infant may suffer brain damage, which can lead to cerebral palsy.
If you already have an infant or toddler at home, be certain to “baby proof” your home. This includes making sure cleaning supplies and other toxic substances are out of reach.
What Are the Treatment Options for Cerebral Palsy?
Currently there’s no cure for cerebral palsy, but a variety treatment options can provide help and improve the quality of life of babies and children.
Therapy is common for almost all children with cerebral palsy as it helps them with the crucial aspects of growth and development. Therapy is usually started shortly after a diagnosis and can include both physical and speech therapy. Therapies help patients learn techniques for movements, stretching, hearing, eating, drinking, learning, speech, hearing, and social development.
Generally, medications are used to help control spastic movements, seizures, and control pain. Your physician will go over what kind of medication your child will need, depending on his/her symptoms. The following medications may be prescribed to help with cerebral palsy symptoms include:
- Stool softeners/laxatives
- Dantrolene (Dantrium)
Surgery, in some cases, may be a treatment option. Surgery for cerebral palsy is usually to help children have better orthopedic functions. Common surgery for cerebral palsy patients include repairing hip dislocations, as well as scoliosis surgery. Surgery also may include nerve root repair, tight/stiff muscle repair, and surgery to reduce spasticity.
Leg braces, wheelchairs, communication boards, and other assistive devices may also be a part of the treatment care plan. In addition, your child may have numerous healthcare professionals assisting him/her, including physical therapists, physicians, counselors, social workers, nurses, special education teachers, and more.
Surgery in the upper extremities is also common, especially on the arms and shoulders.
Therapy, provided in various forms, help people with cerebral palsy with physical, mental, social, and academic benefits. If it’s started early enough after diagnosis, many forms of therapy for cerebral palsy can reduce impairment and the risks of developing other conditions associated with cerebral palsy.
Therapy is usually combined with other treatments, such as drug therapy, surgery, and assistive technology, which help benefit the child even further. When physicians determines the child’s medical goals, they can then develop an individualized therapy plan.
Keep in mind that therapy can also be extremely beneficial to parents and caregivers. For example, nutritional therapy can help people understand specific dietary needs, while behavioral therapy can help teach parents the benefits of positive reinforcement.
Common types of therapy used to help children with cerebral palsy include:
- Intensive Suit
Is Cerebral Palsy Fatal?
Prior to the mid 20th century, many children with cerebral palsy didn’t live through adulthood, but that was before today’s medical advancements. Cerebral palsy is not a fatal disorder, but it generally requires early intervention and good medical care, especially for children with severe forms of the disorder. Today, the odds of reaching adulthood are much more favorable for children with cerebral palsy.
It’s important to note that some of the conditions of cerebral palsy can be life-threatening if not treated in time or correctly, such as breathing and swallowing difficulties (which can lead to pneumonia or malnutrition), chronic seizures, or life-threatening pressure sore infections.
What Are the Associated Conditions of Cerebral Palsy?
Associated conditions, also known as associated disorders, are medical conditions that co-exist with another medical condition. However, associated conditions shouldn’t be confused with secondary conditions, which are caused directly by the primary condition (cerebral palsy).
For instance, a secondary condition of cerebral palsy could be the inability chew and swallow directly, skin problems due to drooling, or bowel issues. In other words, secondary conditions happen because of cerebral palsy itself, while associated conditions are different medical issues altogether that some children with cerebral palsy will develop.
There are a number of cerebral palsy associated conditions. It doesn’t mean that every child with cerebral palsy will develop these, but generally, kids with CP have at least one co-existing medical disorder. The most common associated conditions of cerebral palsy include:
- Hearing and/or vision impairment
- Cognitive issues
- Behavioral, emotional issues
What is Life Like for Someone with Cerebral Palsy?
The prognosis for cerebral palsy depends on each individual, but most people with the disorder have a typical life expectancy, no different from anyone else. Many children with cerebral palsy have average or even above average intelligence measures, although many may have some form of cognitive issues that will require additional educational assistance. Yet, most kids can go to school with their peers, but may need adaptive equipment for physical needs, to communicate, or for mobility.
Some children have “light” cerebral palsy, as mentioned earlier, and aside from muscle spasms and muscle tightness, they may be able to carry on as non-disabled child, with no associated disorders. Other cases of cerebral palsy, are of course, more severe, and a child with severe CP may have a number of associated conditions. The associated conditions are typically what cause many medical problems, which, in some cases, can affect lifespan, especially without early intervention.
What Do I Do If I Can’t Afford My Child’s Expenses?
Children with special needs often need additional medical care and other requirements that can become quite costly. According to the Morbidity and Mortality Weekly Report (MMWR), the average cost to raise a child with cerebral palsy, including direct and indirect medical costs, is around $921,000 (this doesn’t include out-of-pocket expenses, lost wages, or emergency room visits). If you find yourself struggling to keep up with expenses, there are several options that you and/or your child may qualify for.
For example, kids with motor dysfunctions qualify for cash assistance from the government. This falls under section 111.000 of the Social Security Disability Evaluation. There is a process you need to follow to get your child qualified, including gathering pertinent medical information, labs and tests results, social security number, birth certificate, etc. Those approved for cash assistance from the Social Security Administration (SSA), generally qualify for full medical insurance at little to no charge.
Additionally, you may qualify for free or reduced child care for special needs children under the Americans With Disabilities Act (ADA) and educational assistance under the The Individuals with Disabilities Act of 2004.
Last but not least, if your child’s cerebral palsy was caused due to negligent medical mistakes, you have the option to file for compensation against the responsible party. Negligent medical mistakes can happen in a variety of different ways.
How Do I Know if My Child’s Disorder Was Caused by Medical Errors?
As previously mentioned, medical errors occur when a doctor or another healthcare professional make careless and negligent mistakes during the mother’s pregnancy, or during or shortly after childbirth. The following are some of the common ways that medical errors occur:
- A doctor failing to diagnose a maternal condition that could lead brain injuries (which can cause cerebral palsy)
- A doctor, nurse, or healthcare professional failing to monitor, detect, and treat maternal or fetal distress
- Improper use of birth-assisted tools
- A doctor failing to schedule and carry out an emergency C-section
- A doctor failing to detect and treat infant jaundice (which can lead to brain damage, and in turn, cerebral palsy)
Malpractice is a tricky area, however, because not only does there have to be enough proof in place to file a case, but there are also certain rules in place that must be met. For example, most states require that a patient/doctor relationship must have existed when the medical negligence took place. Additionally, you’ll need to ensure that injuries did indeed come from the negligent mistakes of a healthcare provider (s). However, if the case is valid, a successful legal suit can help you take care of your child for life.
What is the United Cerebral Palsy?
The United Cerebral Palsy (UCP) is a non-profit organization dedicated to helping people with cerebral palsy. Assistance from UCP comes in many different ways from over 80 nationwide affiliates, and can include help with transportation, housing, recreational activities, traveling, health awareness, assistive technologies, and much more. According to the official UCP site,
“UCP educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. UCP works to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network that has helped millions.”
Is There a Cure For Cerebral Palsy?
Currently, there is no cure for cerebral palsy. However, the disorder itself doesn’t get worse as someone ages (although associated medical conditions of CP can sometimes increase in severity). That being said, scientists and researchers conduct ongoing studies in hopes of one day finding a cure.
Some of the current cerebral palsy research includes studies on stem cells, which has shown promise. In a study done by Dr. Evan Snyder, a neurologist at Harvard Medical School, mice injected with stem cells had damaged brain cells replaced with healthy ones. It’s still unclear whether this method will work with children, but scientist continue to research to determine if there is a safe and proven way for damaged brain cells to repair themselves or replenish with new cells.