Epilepsy after a birth injury

How does this happen?

A brain injury leaves an area of damaged tissue and, around it, tissue that has rewired itself. Over months or years those new connections can start firing together in bursts. That is the origin of most epilepsy that follows a birth injury. ²

This is why epilepsy after a birth injury often does not appear straight away. Seizures in the first days are acute seizures caused by the injury as it happens. Epilepsy is what may develop later, once the tissue has reorganized. ¹

The risk is higher after injuries that affect the outer layer of the brain, where seizures start most readily: perinatal stroke, grade IV bleeding, meningitis, severe hypoxic-ischemic encephalopathy, and brain malformations. ²

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

• The original brain injury, whatever caused it, including injuries nobody could have prevented. ²
• Perinatal stroke, which usually has no identified cause. ³
• Brain malformations that formed during pregnancy.
• Genetic epilepsy syndromes, which can begin in infancy and are not caused by injury at all. Some respond to specific medicines, which is why genetic testing changes treatment. ¹
• meningitis, even when treated correctly and promptly.

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.

The gaps here are less often about causing epilepsy and more often about recognizing and treating it.

• Infantile spasms not recognized, and put down to colic, reflux or startle. Delay in diagnosis is associated with worse developmental outcomes, which is what makes this urgent. ¹
• EEG not done when seizures were suspected. ⁴
• Drug-resistant epilepsy not referred to a specialist center after two well-chosen medicines failed. ¹
• Genetic testing not done in a child with epilepsy that does not fit the injury, where a specific diagnosis can change treatment. ¹
• The original injury not prevented or treated, which takes you back to the relevant condition page.

Whether any of this amounts to a departure from the standard of care takes a physician expert reading the whole record.

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

Acute newborn seizures, if the injury is happening now. These are not epilepsy, though they raise the risk of it. See neonatal seizures. ⁴

The first week

Acute seizures from the injury itself. Most stop within days.

Around 3 months

Infantile spasms can begin. Look for:

• Sudden brief clusters of the body folding forward, or the arms flinging out and the knees pulling up.
• Clusters of many spasms over several minutes, often on waking from sleep.
• A cry or a strange look between spasms.
• A child who stops making developmental progress, or who loses a skill they had.

Around 6 months

• Infantile spasms, most commonly in this window.
• Loss of a skill, or a plateau in development.
• Focal seizures: staring, one arm stiffening, head turning to one side.

Around 12 months

• Focal seizures.
• Ongoing spasms.
• Delay in sitting or walking. ⁵

Toddler years

• Focal seizures, sometimes with a warning sensation the child cannot describe.
• Drop attacks, in which the child falls suddenly.
• Brief staring episodes.
• Seizures triggered by fever, tiredness or illness.

School age

• Established epilepsy of a particular type, which is now well characterized.
• Learning and attention differences, which can be caused by the seizures, by the underlying injury, or by the medicine, and disentangling those is a real clinical task.
• Social effects, including restrictions on swimming and, later, on driving.

How is it diagnosed?

EEG is the central test. It records electrical activity, shows where seizures start, and identifies specific patterns. In infantile spasms, a chaotic pattern called hypsarrhythmia is characteristic. ¹

A routine EEG can be normal in a child who genuinely has epilepsy, because it only captures a short window. Ask about a sleep EEG or prolonged monitoring if seizures are suspected and the first EEG was normal.

MRI shows the underlying injury or malformation and helps predict where seizures come from. ²

Genetic testing is increasingly part of the workup, especially for epilepsy that does not fit the known injury or that is hard to control, because specific genetic diagnoses change which medicines are used. ¹

Video. Your phone is a diagnostic instrument here. A 30-second video of an episode gives a neurologist information that a description cannot. Film the whole episode including what happens immediately after.

What to ask for in writing

The seizure type, the epilepsy type or syndrome if one is identified, what the EEG showed, what the MRI showed, and what the plan is if the first medicine does not work.

What is the treatment?

Antiseizure medicines are the first line, chosen for the seizure type. Many people achieve control on medication. ¹

Infantile spasms are treated differently from other epilepsies, with specific first-line treatments and an emphasis on stopping them quickly. This is a reason to seek assessment urgently rather than waiting for a routine appointment. ¹

Drug-resistant epilepsy. If seizures continue after two well-chosen medicines, the chance that a third will work is much lower, and referral to a specialist epilepsy center is the right next step rather than continuing to cycle medicines. ¹

Options at that stage include:

• Dietary therapy, most often the ketogenic diet, which is a genuine medical treatment delivered by a specialist team.
• Vagus nerve stimulation, an implanted device.
• Epilepsy surgery, which can be highly effective in carefully selected children where seizures come from one identifiable area. In a child with a single area of injury from a birth event, this is worth asking about explicitly. ¹

A rescue plan. Every family should leave clinic with a written plan: what to do during a seizure, how long before it is an emergency, what rescue medicine to give and how, and who to call.

What is the long-term outlook?

Outcome depends on the epilepsy type, on how well seizures respond to treatment, and on the underlying injury.

Many children achieve good control on medicine and live without significant restriction. ¹

Some children have epilepsy that is hard to control, and this is associated with more difficulty in learning and development. Referral to a specialist center matters here, because options exist beyond more medicines.

Infantile spasms carry a higher risk of developmental difficulty, and the evidence supports treating them fast. That is the single most actionable point on this page. ¹

Some children outgrow their epilepsy. Ask your neurologist whether that is realistic for your child's type, and what would need to be true before medicine could be reduced.

What does daily life look like?

Medicine every day, usually twice, with the practical challenge of never missing doses.

A written seizure action plan at home, at school and with anyone who cares for your child.

Safety adjustments: supervision around water, care with heights, and later the driving rules in your state.

Sleep matters more than families expect. Lack of sleep is one of the most common seizure triggers, and protecting sleep is genuine treatment.

At school, the epilepsy goes in the health plan, staff are trained in the action plan, and any learning effects are assessed rather than assumed. Medicine side effects on attention and processing are real and are worth naming at review appointments. ⁶

What does care cost over a lifetime?

No agency publishes a lifetime cost specific to epilepsy after birth injury.

Where epilepsy accompanies cerebral palsy, the published anchor is CDC's estimate of about $921,000 in 2003 dollars, and epilepsy tends to push costs above the average through medicines, monitoring and hospital admissions. ⁷

See the cost of care estimator.

What can you do this week?

1. If you see clusters of the body folding forward or arms flinging out in a baby under 12 months, film it and seek assessment urgently.
2. Ask for the seizure type and epilepsy type in writing.
3. Ask what the EEG and MRI showed.
4. Get a written seizure action plan for home and school.
5. Ask what the plan is if the first medicine does not work, and at what point you would be referred to a specialist center.
6. Ask whether genetic testing is indicated.
7. Ask whether epilepsy surgery might ever be an option, if the injury is in one area.

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 neurologist

• What type of seizures, and what type of epilepsy?
• What did the EEG show, and was it a routine, sleep or prolonged recording?
• If this medicine does not work, what is next, and when would you refer to an epilepsy center?
• Is my child a possible candidate for epilepsy surgery?
• Should we do genetic testing?
• What are the side effects we should watch for, especially on learning and attention?

For the epilepsy nurse or clinic

• What exactly do I do during a seizure, and at what point do I call an ambulance?
• What rescue medicine, and can you show me how to give it?
• What do I do if a dose is missed?
• What should the school have in writing?

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