The Cost of Cerebral Palsy

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It can be easy for a new parent to feel moments of defeat. Your little one isn’t latching while breastfeeding, you’re exhausted both physically and emotionally from the sleepless nights of caring for a newborn, or you are struggling to keep up with the demands of raising a child while continuing to work. But what about for those parents who are both dealing with a new baby and a birth injury? For those parents, the cost of treating an injury, such as cerebral palsy caused by brain damage that occurred during a difficult delivery, adds on tremendous stress and a financial burden that they weren’t expecting.

Yes, raising a child is expensive, in any case. No one plans for their child to be injured during or after birth, or for them to have a genetic malformation or other special needs that can take a lot of time and money to treat. You love your baby no matter what, but if your doctor was the one responsible for his injury, you may be entitled to compensation that can help your family for years to come.

To give you a very brief sense of life with cerebral palsy (CP) as it pertains to your wallet, we’ll give details on the costs associated with CP, the treatment available for CP, whether or not it’s preventable, and how you can get help today with your child’s medical expenses.

How much does cerebral palsy cost over one’s lifetime? How will it impact my family?

While the initial cost of raising any child can seem like a lot — setting up a nursery with a crib and reading nook, buying diapers or formula, and thinking long-term on savings, like for college — it pales in comparison to the cost of raising a child with medical needs.

Cerebral palsy is for life. There is no cure. As the most common motor disability in childhood, it affects about 1 in 323 children in the U.S., so there’s a decent chance you may know someone who has cerebral palsy, or know of someone who has cerebral palsy.

Fifteen years ago, lifetime costs in the U.S. for cerebral palsy were expected to surpass $11.5 billion. Per person, the average lifetime cost of cerebral palsy was $921,000. Adjusted for inflation to 2017 dollars, that’s over $1.24 million per person. Some of these costs include doctor visits, hospital stays, assistive devices, and home or automobile modifications; however, indirect costs play a big role in determining that figure. These include things like productivity losses at work and home when someone with cerebral palsy dies prematurely, has to stop working or reduce their hours, or has never been able to work.

But what about the actual costs you can feel with CP now?

Taking into account some of those direct costs, the good news is that most children with CP can walk independently (about 58%), according to the Autism and Developmental Disabilities Monitoring (ADDM) CP Network, so that eliminates the need to purchase walkers or wheelchairs for those patients. However, co-occurring conditions are incredibly common with CP — about 60% of kids with CP have another developmental disability. Nearly half of children with CP (41%) have co-occurring epilepsy, while about 7% have autism spectrum disorder (ASD). The ASD percentage is particularly relevant because only 1% of the population has ASD, so a child with cerebral palsy is much more likely to have ASD than one without CP.

For children with an intellectual disability and CP, their family’s costs are the highest. Those enrolled in Medicaid with cerebral palsy alone paid 10 times more than children without cerebral palsy or an intellectual disability — about $16,721 vs. $1,674 in 2005 dollars (about $21,500 today). Meanwhile, costs for children with CP and an intellectual disability were 26 times higher than those without either. They paid a whopping $43,338 in 2005, or nearly $56,000 today.

Are cerebral palsy costs any better outside the United States?

Those families thinking of escaping across the pond for better doctors or maybe a lower cost may not find much luck.

In 2009, the first study outside the United States about the lifetime costs of cerebral palsy was conducted. Lifetime costs of CP were divided into three categories: health care costs, productivity costs, and social costs. More than 2,300 Danish people with CP were analyzed, with CP costing 860,000 euro for men and 800,000 euro for women. In 2009 U.S. dollars, that translated to $1.24 million and $1.15 million, respectively — which hits the U.S. cost in 2017, eight years later, at least for men. Social care costs during childhood were the biggest chunk of this budget.

A 2008 study on the economic burden of CP in China, meanwhile, found the lifespan total economic loss (not cost, but economic loss) of all new CP cases in 2003 to amount to $2 billion to $4 billion U.S. dollars. Productivity costs accounted for 93% of this estimate. An individual case was expected to cost a little over $67,000 then, with the study’s authors recommending public provision and financing of necessary preventative and rehabilitative services to “mitigate this heavy burden for patients and their families.”

What are some of the treatment options for cerebral palsy?

Most children with CP (75-85%) have spastic CP, resulting in stiff muscles and awkward movements. We explore spastic CP at length in this post: Spastic Cerebral Palsy: What You Need to Know. The other types of cerebral palsy are dyskinetic and ataxic, or a mixed combination of symptoms from any of the types.

CP is diagnosed typically around age 1 or 2, so treatment would not begin until then. A variety of tests will determine if baby has cerebral palsy, including any communication milestones that he should have met as well as how soon he learns to sit, stand, and walk; his posture; and his reflexes and muscle tone.

Treatment for cerebral palsy includes various therapies, including speech and physical therapy, as well as learning to use any sort of assistive devices. Then there’s maybe some special education at school and pain medication. Managing spasticity is important to prevent painful contractures and deformities, and that may involve more than just a physical therapist, but orthopedic surgeons and physiatrists. Botox, although it has its own risks, has been one common treatment for spasticity over the past two decades.

Some children may need the care of a medical home, as suggested by the American Academy of Pediatrics, “to minimize redundant services and assure comprehensive services, monitoring of response to treatments and impact of the child’s illness on the family, interpreting findings to the family, orchestrating co-management with specialists and specialty teams, and advocating for the patient with payers and providers such as the public schools.”

The severity of CP is of course going to predict long-term costs, along with life expectancy. Walking ability, quality of speech, hand function, and intelligence quotient can make or break employment opportunities. Mortality risk also increases with the number of impairments. In one study, those unable to lift their head while in prone position had a life expectancy of just 20 years.

Is cerebral palsy preventable?

Most CP cases, according to the Centers for Disease Control and Prevention, are congenital, happening before or during birth. About one-half of cases in developing countries occur in babies who are born prematurely.

These factors can increase the risk for CP, though it still may not be preventable:

• When baby is born underweight or pre-term
• When baby is part of a multiple birth
• When baby is conceived by in vitro fertilization
• If mom had an infection while pregnant
• If baby has jaundice that goes untreated
• Birth complications, such as asphyxia

Other cases of CP are acquired, and occur more than 28 days after birth. These can be caused by a brain infection, such as meningitis, or if baby suffers a serious head injury.

Interventions to prolong pregnancy is one strategy to reduce the risk for CP, in addition to reducing the number of multiple births related to in vitro fertilization and other assisted reproductive technology. Preventing preeclampsia (high blood pressure) during pregnancy also can help, and if you’re smoking, it’s best to quit before becoming pregnant.

See also: Can Obesity Before Pregnancy Cause Cerebral Palsy?

What do I do if my baby’s cerebral palsy was caused by a birth injury?

While it can be difficult to determine the exact cause of cerebral palsy, sometimes it’s the result of a birth injury. Perhaps your birthing team didn’t do everything they could and baby sustained brain damage as a result of failing to monitor his heart rate properly, or there was a miscommunication between a doctor and nurse and the wrong medication was given to you, causing early labor or delivery issues.

If you think your baby’s cerebral palsy may have been caused by the negligence of a doctor, it’s best to speak with an experienced birth injury attorney to determine your options. Doctors can make mistakes, but that doesn’t mean you should have to pay for them.

We know how difficult raising a child with cerebral palsy can be; Safe Birth Project is here for support. You can contact our experienced team at any time to learn how we can help.

See also:

• Safe Delivery: How Doctors Can Avoid Birth Injuries
• Fetal Stroke and Neonatal Stroke: What You Need to Know
• Dad Matters: How a Father’s Genes Affect Baby
• Millions of Women Don’t Know They Have Birth Injuries — and They’re Suffering