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Hemimegalencephaly Program

Bella leans on a cushion while standing in her ankle braces.

Putting Her Seizures in the Past

Bella has celebrated two years seizure-free after receiving an innovative treatment pioneered by doctors at Children's National Hospital for the rare brain condition hemimegalencephaly.

Read Bella's story

Babies born with the rare condition hemimegalencephaly often experience uncontrollable seizures that gradually injure their brain and disrupt their ability to function. This brain malformation occurs usually as a spontaneous problem very early in brain development (the condition is not inherited).  With high-quality brain MRIs, we are able to thoroughly evaluate the degree of brain malformation causing these seizures.

Until recently, families had few treatment options for this condition, all of which involved major brain surgery to remove the part of the brain causing the seizures. 

But doctors at Children’s National Hospital have developed a successful alternative to major brain surgery for infants less than 3 months of age – making precise, controlled strokes in your baby’s brain that mimics surgery to stop the seizures. Through our multidisciplinary team of neonatal neurologists, neurointerventional radiologists, neonatologists, neurosurgeons and our Level IV Pediatric Epilepsy Center, we can provide this minimally-invasive option to stop your baby from having seizures.

We are the only program in the world offering this unique treatment option.

Choosing Children’s National for Hemimegalencephaly Care

Babies born with hemimegalencephaly – which occurs in just a handful of children worldwide each year – have few treatment options and our program at Children’s National offers hope for a bright future.

The late Taeun Chang, M.D., former director of the Neonatal Neurology and Neonatal Neurocritical Care Program, and Monica Pearl, M.D., director of the Neurointerventional Radiology Program, developed the stroke-inducing approach several years ago as an alternative to traditional epilepsy surgery for infants less than 3 months of age. The procedure has been successful in several patients, including Bella, a little girl who recently celebrated two years of seizure freedom after our groundbreaking treatment.

This procedure may be possible for your child depending on his or her age. For children less than 3 months of age who have seizures that do not stop with seizure medications, this procedure can be possible.

For children older than three months, parents should contact our Comprehensive Pediatric Epilepsy Program to learn about other available options that our Level IV Pediatric Epilepsy Center can provide. Its team of pediatric surgical epileptologists, pediatric epilepsy neurosurgeon (Chima Oluigbo, M.D.), and pediatric neuropsychologists provide advance surgical options including functional and anatomic hemispherectomy. 

Contact the Hemimegalencephaly Program

If you would like to learn more about our innovative approach to treating hemimegalencephaly, email us or call our Neonatal Neurology and Neonatal Neurocritical Care Program at 202-476-2120.

Families can contact us directly, or be referred by their doctor or hospital. If your baby is having seizures despite taking medication, he or she should be referred as soon as possible.

Hemimegalencephaly Program Team