Photo: Danielle Rowland Photography
Bella had hemimegalencephaly, or HME, a rare disorder that causes half of the brain to grow overly large and abnormal,causing constant seizures.
“Bella was only a couple of days old. It was devastating news,” her grandmother, Ann Getting,said in a story with Children’s National Hospitalin Washington, D.C., where Bella eventually went for treatment. “They told us about all kinds of potential disabilities. They also said it would be extremely difficult to control her seizures with medications.”
Because HME is so rare, there are few treatment methods. The typical approach is to open up the skull and remove half of the brain — the left side is not necessary to function normally — to eliminate the tissue that iscausing the seizures. But they would have to wait until Bella was 3 months old to safely operate.
Bella Hauschildt.Ann and David Getting
At that point, though, waiting was also too risky. Bella was already having 20 to 40 nonstop seizures each hour, even withseizure medication, and if they waited, her IQ would go down 10 to 20 points a month.
“Her seizures were so bad, her quality of life would have been negatively impacted if we waited,” her grandfather, David Getting, said.
Bella and her grandfather, David Getting.Ann and David Getting
The procedure, being very new, also held risks, but the Gettings said it “didn’t take long” to decide on that option.
“You proceed with a treatment that offers more hope. You grab hope with both hands. You have the courage to try something that could have a much better outcome,” Ann said.
RELATED VIDEO: Melanie Griffith Reveals Epilepsy Diagnosis, Says Divorce from Antonio Banderas Was ‘a Real Healer’
Before Bella turned 1 month old, the Children’s National team started inducing “controlled” strokes in her brain in three procedures spread out over several weeks. That successfully stopped 98 percent of the problems in her left brain.
Bella was adopted in October while she was still recovering at Children’s National and reliant on multiple seizure medications that made her lethargic.
Ambre, Mark and Bella Hauschildt.Danielle Rowland Photography
But Bella slowly improved, and doctors began to take down her medications, which snapped her out of the fog.
Now 14 months old and at home in Iowa with Ambre and her adoptive father, Mark, Bella is down to three seizure medications and doing extremely well.
Bella Hauschildt.Ambre and Mark Hauschildt
“She has not had a seizure since Dr. Chang did the procedures. No seizures. No side effects. You would never know she has epilepsy,” Ambre said. “It’s pretty amazing. We’re beyond proud of her. We celebrate all the little things: just seeing her hold her head up, learning to reach for things, and, of course, now she’s talking. She’s done all these things we didn’t know when or if she’d be able to do.”
source: people.com
