Cerebral palsy: what it is and what to expect

How does this happen?

The parts of the brain that plan and control movement are hurt or do not develop as expected. The muscles themselves are usually normal. The problem is the signal that reaches them.

Where the injury sits decides what the child's body does.

• Injury to the white matter near the fluid spaces, which is common in babies born early, tends to affect the legs more than the arms. That pattern is called periventricular leukomalacia, and it usually produces spastic diplegia. ⁶
• Injury to the basal ganglia and the thalamus, which is common after a sudden severe loss of oxygen at term, tends to produce dyskinetic movements. ⁶
• Injury on one side of the brain, often from a perinatal stroke, affects the opposite side of the body and produces hemiplegia. ⁷
• Injury or a difference in the cerebellum produces ataxia, with shaky movement and poor balance. ¹

There is a second, slower process that matters just as much. A muscle that is always tight does not lengthen as fast as the bone it is attached to. Over years, that pulls joints out of line, which is why orthopedic checks and hip surveillance are part of care and not an afterthought.

What causes it?

Two different questions get mixed together here. The first is what leads to this injury in the body. The second is whether anyone could have prevented it. They are not the same question, and the answer to the first does not settle the second.

Happens even with perfect care

Most cerebral palsy is not caused by anything that happened during labor. That statement surprises many families, and it is the finding professional bodies have restated for years. ⁸

• Being born early is the single largest risk factor. The earlier the birth, the higher the risk. ⁹
• Infection during pregnancy, including chorioamnionitis, can injure developing white matter before labor starts. ⁸
• Perinatal stroke often has no identifiable cause and no warning.
• Placental problems that limit blood flow across weeks or months.
• Genetic differences. A growing share of cases that look like cerebral palsy turn out to have a genetic cause found on testing. ¹
• Multiple pregnancy. Twins and higher-order multiples have a higher rate, partly through prematurity. ¹
• Fetal growth restriction and being small for gestational age.

If your child has cerebral palsy, the starting point is that in many cases nobody can name the cause. That is not a failure of your medical team and it is not something you did.

Associated with gaps in care

These are situations where published standards say what the care team should watch for and do. A gap here does not prove anyone caused your child's injury. It points to where the medical records will have an answer.

• A loss of oxygen around birth that was not recognized or acted on. This accounts for a minority of cerebral palsy, not the majority, but when it is the cause the records usually show it. ⁸ See fetal heart rate monitoring and delayed C-section.
• Severe jaundice that was not treated in time, which can cause kernicterus and a specific kind of dyskinetic cerebral palsy. There is a published treatment threshold chart for exactly this reason. ¹⁰
• Low blood sugar that was missed in a baby at known risk. ¹¹
• Untreated maternal infection, where screening and antibiotic standards exist. ¹²
• Magnesium sulphate not given to a mother in labor before 32 weeks. Magnesium given for neuroprotection reduces the risk of cerebral palsy in babies born very early. ¹³
• Antenatal corticosteroids not given when preterm birth was expected, which affects survival and brain outcomes. ¹⁴

Whether any of these amounts to a departure from the standard of care takes a physician expert reading the whole record. It is not something a website can decide, and it is not something one chart entry decides either.

What are the signs, by age?

Signs change as a child grows. A newborn cannot show you a walking problem. Some children look fine at first and show differences months later.

At birth and the first hours

Cerebral palsy is almost never diagnosed at birth. What may be present are the events that raise risk: a very early birth, a difficult resuscitation, seizures, or a brain scan showing bleeding or white matter injury.

The first week

• Seizures.
• Very low or very high muscle tone.
• Trouble feeding and a weak suck.
• An abnormal brain ultrasound or MRI.

Around 3 months

• Poor head control when pulled to sit.
• Stiff legs, or legs that scissor and cross.
• Hands that stay fisted.
• A body that feels floppy in the middle and stiff at the edges.
• Not smiling socially or not watching faces.

Around 6 months

• Not rolling over. ¹⁵
• Reaching with only one hand while the other stays fisted. A clear hand preference before 12 months is one of the most useful early signs and it should be raised with a doctor. ⁵
• Arching backward when held.
• Difficulty bringing hands to the middle of the body or to the mouth.

Around 12 months

• Not sitting without support. ¹⁵
• Not crawling, or crawling by pulling with the arms and dragging the legs.
• Standing on tiptoes when held up.
• Stiffness that is clearly different on one side.

Toddler years

• Walking late, walking on toes, or an uneven, effortful gait.
• Falling often, or tiring far faster than other children.
• Trouble with spoons, cups and small objects.
• Speech that is late or hard to understand, because the same muscle control affects the mouth.
• Drooling past the age it usually stops.

School age

• Movement differences are established by now and the work shifts to keeping them from getting worse: stretching, bracing, botulinum toxin, sometimes surgery.
• Learning, attention and processing differences are common and are often under-recognized because attention goes to the movement.
• Pain and fatigue are common, and both are under-treated. Ask about them directly.
• Hip position is checked on X-ray on a schedule, because hips can move out of place slowly and without symptoms.

How is it diagnosed?

There is no blood test for cerebral palsy. The diagnosis is clinical, and it is built from three things used together: a brain MRI, a standardized motor assessment, and a neurological examination. Used together in a child with risk factors, these support a diagnosis or a "high risk of cerebral palsy" designation before 6 months corrected age. ⁵

Why the wait, and why waiting is changing

Families are often told to wait and see until age 2. The current evidence says the opposite: the tools to identify a high-risk infant early exist, and early identification allows earlier, targeted therapy during the period of greatest brain plasticity. ⁵

If you are being told to wait and your gut says otherwise, ask directly: "Is my child at high risk of cerebral palsy, and what would change if we treated them as if they were?"

What is usually done

• MRI of the brain, which shows the pattern and often the timing of injury.
• General Movements Assessment, a video-based observation of how an infant moves spontaneously, most useful at around 3 months corrected age. ⁵
• Hammersmith Infant Neurological Examination, a scored examination. ⁵
• Genetic and metabolic testing where the picture does not fit, or where there is no clear injury on MRI. ¹

What a diagnosis includes

A complete diagnosis names four things, and you should have all four written down: the type (spastic, dyskinetic, ataxic, mixed), the distribution (which limbs), the GMFCS level, and any associated conditions such as epilepsy, vision, hearing, feeding or learning differences.

What is the treatment?

There is no cure. There is a great deal of effective treatment, and the evidence for which is which has been mapped systematically. ¹⁶

Therapy

• physical therapy for large movements, strength, and walking.
• occupational therapy for hands, daily tasks, and play.
• speech-language pathology for talking and for safe eating and drinking.
• constraint-induced movement therapy for children who use one side much more than the other. The evidence for improving use of the affected arm is among the strongest in the field. ¹⁷
• Goal-directed training and home programs, where practice is aimed at a specific goal the family chose, are more effective than general handling. ¹⁶

Managing tightness

• Botulinum toxin injections relax a specific tight muscle for a few months, usually to make stretching and bracing work better.
• Oral medicines such as baclofen and diazepam.
• An intrathecal baclofen pump for widespread severe tightness.
• selective dorsal rhizotomy, a surgery that cuts selected sensory nerve roots, used in carefully chosen children with spastic diplegia.

Orthopedic care

• Braces to hold position for standing and walking.
• Hip surveillance, meaning X-rays on a schedule, because hips can drift out of joint painlessly.
• Surgery to lengthen tendons or reposition bones, usually in later childhood.

Everything else that matters

Epilepsy, vision from the brain, hearing, feeding and swallowing, constipation, sleep, pain and mental health are all part of cerebral palsy care. Pain in particular is common and is often missed in children who cannot describe it.

What the evidence does not support

Some widely marketed treatments do not have evidence behind them. The systematic review of interventions is a useful reference before spending money or hope on something. ¹⁶ Ask any provider what evidence supports what they are offering, and what outcome they expect to change.

What is the long-term outlook?

Outlook depends on the GMFCS level and on which associated conditions are present, far more than on the label "cerebral palsy."

• Most children with cerebral palsy walk. Children at GMFCS levels I and II walk independently, with level II having more limits over distance and uneven ground. ³
• Children at level III walk with a hand-held mobility device. At levels IV and V, self-mobility is limited and powered mobility often opens up independence. ³
• Intellectual ability varies widely and does not track movement ability. A child at level V may have typical intelligence and need a communication device to show it. This is one of the most consequential misunderstandings families meet.
• Life expectancy for most people with cerebral palsy is normal or close to normal. It is shortened mainly in people with the most severe motor impairment combined with difficulty swallowing and repeated chest infections. ¹

GMFCS level tends to be stable from about age 2 onward, which is why teams do not usually assign it before then. ³

What does daily life look like?

Time. Therapy plus travel plus exercises at home, on top of ordinary parenting. Ask early whether therapy can happen at home or at daycare.

Equipment. Braces, a stander, a walker, a bath seat, a car seat that fits, a wheelchair. Equipment is prescribed and it is usually covered with a letter of medical necessity from a therapist.

School. From age 3 the school system takes over from early intervention through an IEP. The IEP guide covers what to bring and what to ask for.

Communication. If speech is hard, ask about AAC early. Waiting for speech to develop before trying a device is not supported by evidence, and it costs children years.

Money. Many families qualify for a Medicaid waiver, which can cover therapy and equipment even at higher incomes. Waiting lists are long in many states, so apply early. See paying for care.

Siblings and you. Both are real parts of this. See the caregiver guide and the sibling guide.

What does care cost over a lifetime?

CDC estimated the lifetime cost for a person with cerebral palsy born in 2000 at about $921,000 in 2003 dollars. That figure includes direct medical costs, other direct costs such as special education and home modification, and lost productivity. ⁴

Read that number with three caveats attached.

1. It is in 2003 dollars, and no agency publishes an updated version.
2. It is an average across all severities. A child at GMFCS level I and a child at level V do not have similar costs.
3. It counts the individual's lost productivity but not a parent leaving work, which is often the largest cost a family actually feels.

The lifetime cost estimator shows ranges built from this study with the sources attached. If a legal case is filed, the number that matters is a life care plan written for your child.

What can you do this week?

1. Get the four-part diagnosis in writing: type, distribution, GMFCS level, and associated conditions.
2. Refer to early intervention today if your child is under 3, or to the school district if they are 3 or older. You do not need a diagnosis to refer. ¹⁸
3. Ask for a brain MRI report if one has been done, and ask what it showed.
4. Ask whether genetic testing is indicated, especially if the MRI is normal.
5. Ask when hip surveillance starts and how often.
6. Apply for a Medicaid waiver in your state now, because of the waiting lists. Use the financial help finder.
7. Ask about pain and sleep at the next visit, even if nobody has raised them.

What should you ask each specialist?

Take these with you. Write the answers down in the moment, because you will not remember them later.

For the pediatric neurologist or physiatrist

• What type of cerebral palsy is this, which limbs are involved, and what GMFCS level?
• What did the brain MRI show, and does it suggest when the injury happened?
• Should we do genetic or metabolic testing?
• What are the chances of epilepsy, and what would a seizure look like in my child?
• What should we be doing now that we will be glad we did in five years?

For the therapy team

• What goal are we working toward, and how will we measure it?
• How much of this should we be doing at home, and can you show me?
• Is constraint-induced therapy appropriate for my child?
• When should we look at a communication device?
• What equipment will we need in the next year, and who orders it?

For the orthopedic surgeon

• When does hip surveillance start and how often are X-rays repeated?
• What are we watching for that would change the plan?
• What is the goal of any surgery you are proposing, and what happens if we wait?
• How long is recovery, and what does the family need to do during it?

You can also build a printable list with the question generator.