Kimberly noticed her daughter, Hayden, was having spasms a few hours after she was born. When Kimberly showed a video of the spasms to her pediatrician days later, the doctor said Hayden was having seizures. At 10 days old, Hayden was diagnosed with hemimegalencephaly, a rare condition in which one of the hemispheres of the brain is abnormally larger than the other, which causes catastrophic epilepsy.
“The first word that stuck out when I Googled "hemimegalencephaly" was prognosis: poor,” Kimberly says.
Hayden was having seizures daily, but doctors said she should wait until after she was 1 year old to have the brain surgery that could stop the seizures.
Kimberly didn’t like the idea of waiting and did some research. She found other families who said they never regretted the decision to have the surgery performed, but they wished they had done it sooner.
She and her husband searched for a specialist who would be willing to perform the surgery as soon as possible and found Dr. David Adelson, chief of neurosurgery at Phoenix Children’s Hospital. Dr. Adelson explains that in the past, patients would have one hemisphere of the brain completely removed. He performs a modified procedure where he makes minimal cuts to disconnect the abnormal side of the brain from the rest of the brain and the body.
“We know that the younger that we can get to these patients, the better likelihood that they are going to do better in the long run,” Dr. Adelson says. “The brain in a young child is a wonderful thing because it’s so plastic.”
Find out how Hayden is doing a few months after she had the life-saving surgery.