Neonatal seizures

How does this happen?

Brain cells communicate with small electrical signals. A seizure is a group of cells firing together in a burst, out of step with everything around them.

A newborn brain is wired differently from an older one. The connections that normally dampen electrical activity are not yet mature, while the connections that excite it are already active. That imbalance makes a newborn brain more prone to seizures, and it also explains why newborn seizures rarely spread across the whole brain the way they do in adults. ²

That is the reason they look so unremarkable. A seizure that stays in one small area produces a small sign: an eye that drifts, a lip that smacks, one arm that stiffens. Or nothing at all.

Repeated or prolonged seizures can cause injury of their own, on top of whatever caused them, which is why they are treated rather than watched. 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

• hypoxic-ischemic encephalopathy, the most common cause. ¹
• Perinatal stroke, which usually presents with seizures in the first three days. ⁴
• Bleeding in or around the brain. ²
• Infection, including meningitis and sepsis.
• Brain malformations present from before birth.
• Genetic and metabolic conditions, including genetic epilepsy syndromes that begin in the newborn period.
• Low blood sugar or low calcium, which can occur despite appropriate care in some babies. ³

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.

• Seizures not recognized, because staff were watching for shaking. Subtle signs are the norm in newborns. ¹
• EEG not obtained in a baby with suspicious episodes, so electrical-only seizures went untreated. ¹
• Blood sugar not checked in a baby with known risk factors, where published guidance sets out who to screen and when. ³ See missed hypoglycemia.
• Infection not recognized and treated promptly, where standards for evaluation exist. ⁵
• A loss of oxygen during labor not acted on. ⁶
• Cooling not offered or started late in a baby with moderate or severe hypoxic-ischemic encephalopathy. ⁷

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

• Eyes deviating or fixed to one side.
• Repetitive lip smacking, chewing or sucking that is not feeding.
• Bicycling or pedaling movements of the legs.
• Stiffening of one limb, or rhythmic jerking of one limb.
• Apnea, meaning a pause in breathing, especially with any of the above.
• Sudden changes in heart rate or blood pressure with no other explanation.

The first week

• The same signs, often repeating in clusters.
• Nothing visible at all, in a large share of cases. This is why EEG monitoring is used. ¹

Around 3 months

• Most newborn seizures stop within days to weeks.
• Infantile spasms can begin in this period. They look like sudden clusters of the body folding forward or the arms flinging out, often on waking. They are easy to mistake for colic or startle, and they need urgent assessment. ⁸

Around 6 months

• Ongoing seizures suggest epilepsy rather than acute newborn seizures. ⁸
• Developmental delay may be apparent, driven mostly by the underlying cause.

Around 12 months

• Established epilepsy in a minority of children.
• Delay in sitting or other milestones, judged at corrected age. ⁹

Toddler years

• Seizures in some children, with a wide range of types.
• Motor and speech differences reflecting the original injury.

School age

• Epilepsy, learning differences, or neither, depending mostly on what caused the seizures in the first place.

How is it diagnosed?

EEG is the test. Full conventional EEG with video is the reference standard, because it shows both what the brain is doing and what the baby is doing at the same moment. ¹

aEEG is a simplified bedside monitor with fewer leads. It is useful for continuous monitoring and it misses some seizures, particularly short ones and those confined to a small area. Ask whether your baby had aEEG, full EEG, or both. ²

Immediate blood tests look for the causes that can be fixed in minutes: glucose, calcium, magnesium, sodium. ³

Infection workup, including blood cultures and usually a lumbar puncture, because meningitis is a treatable cause that must not be missed.

Imaging. MRI shows stroke, bleeding, malformation and the pattern of injury from low oxygen. cranial ultrasound is used first in many units and misses a great deal at the brain surface. ²

Genetic and metabolic testing where the cause is not otherwise clear, especially with seizures that are hard to control. Some genetic epilepsies that begin in the newborn period respond to specific medicines, so finding them changes treatment. ⁸

Questions worth asking about the EEG

• Was it a full EEG or aEEG?
• How long was the recording?
• Were there electrical seizures without visible movement?
• How many, and how long did they last?
• What did the background activity look like? The background between seizures often predicts outcome better than the seizures themselves. ²

What is the treatment?

Treat the cause first. Low blood sugar gets glucose. Infection gets antibiotics. Low calcium gets calcium. These are fixes, not holding measures. ³

Anti-seizure medicine. Phenobarbital is the most widely used first medicine for newborn seizures. Levetiracetam, fosphenytoin, midazolam and lidocaine are used as well, with practice varying between centers. ²

Therapeutic hypothermia, if the cause is moderate or severe hypoxic-ischemic encephalopathy and the baby is within six hours of birth. ⁷

Monitoring during treatment, because medicine can stop the visible movements while electrical seizures continue. Without EEG you cannot tell whether treatment worked or only removed the signs. ¹

Stopping the medicine. Most acute newborn seizures resolve within days, and many babies are weaned off medicine before or shortly after discharge. Ask directly what the plan is for stopping, because continuing by default is a common drift and phenobarbital has effects on development.

What is the long-term outlook?

Outcome is driven mainly by what caused the seizures, not by the seizures alone. ²

• Seizures from low blood sugar or low calcium, corrected quickly, often carry a good outcome.
• Seizures from perinatal stroke usually stop within days and the outlook follows the stroke.
• Seizures from severe hypoxic-ischemic encephalopathy carry the outlook of the underlying brain injury.
• Seizures from a genetic epilepsy syndrome follow that syndrome.

Most babies with acute newborn seizures do not go on to have epilepsy, though the risk is higher than in the general population. ⁸

Two findings predict outcome better than the seizures themselves: the EEG background activity between seizures, and the MRI. ² Ask about both.

What does daily life look like?

In the NICU, seizures mean wires on the head, frequent blood tests, and days of waiting.

At home, if your baby leaves on medicine, you will need a plan: the dose, what to do if a dose is missed, when it will be reviewed, and what a seizure would look like now.

Learn to film. If something happens that worries you, a 20-second phone video answers a question that ten minutes of description cannot.

Most families of babies whose seizures stopped in the newborn period describe a long period of watching every twitch. That is normal, and it usually eases. If it does not, or if it is stopping you from sleeping or being with your baby, that is worth raising. See the parent's own health guide. ¹⁰

What does care cost over a lifetime?

No agency publishes a lifetime cost for newborn seizures, because the cost is driven entirely by the underlying cause.

Where seizures follow brain injury that leads to cerebral palsy, the published anchor is CDC's estimate of about $921,000 per person in 2003 dollars. ¹¹

Where seizures resolve and development is typical, the cost is the hospital stay and follow-up. See the cost of care estimator.

What can you do this week?

1. Ask whether EEG confirmed the seizures, and whether there were electrical seizures without visible movement.
2. Ask what the EEG background looked like, which is the part that predicts most.
3. Ask what caused them, and what has been ruled out.
4. Ask what the plan is for stopping medicine.
5. Ask whether glucose, calcium and infection were all checked.
6. Ask whether an MRI is planned and when.
7. Learn what a seizure would look like at home, and keep your phone ready to film.

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 neonatologist

• Was this confirmed on EEG, and was it full EEG or aEEG?
• Were there electrical seizures with no movement?
• What was checked for a cause: glucose, calcium, infection, imaging?
• What is the medicine, and what is the plan for stopping it?

For the neurologist

• What did the EEG background show between seizures?
• What did the MRI show?
• Should we do genetic or metabolic testing?
• What is the risk of epilepsy later, and what would we watch for?
• What does a seizure look like in a 6-month-old, so I know what I am looking for?

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