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Bella's Story

Hemimegalencephaly (HME)

Have courage. That’s what Taeun Chang, M.D., counseled David and Ann Getting as they debated a fateful decision about their first grandchild’s future.Bella Grace was born Thursday, Aug. 16, 2018, in Ames, Iowa. On that first day, she seemed normal. Everything seemed perfect.

The second day, slight twitching was observed in Bella’s eyes. Testing revealed that Bella’s brain was abnormal on the left side. The family was informed that Bella would be transferred to Des Moines immediately. The Gettings’ family friend, pediatrician Dr. Amy Mashburn (who they call “Dr. Amy”) dropped everything to fly from Kentucky to be by the couple’s side. 

The Des Moines hospital lacked the right person to read the brain magnetic resonance image (MRI). Bella was transferred to a third hospital one mile away on Saturday. That’s when the Gettings learned Bella had hemimegalencephaly (HME), a rare brain disorder in which one half of the brain grows abnormal and large and misbehaves by triggering repeated difficult seizures.

“Bella was only a couple of days old. It was devastating news. They told us about all kinds of potential disabilities. They also said it would be extremely difficult to control her seizures with medications,” recalls Ann Getting. “They didn’t have this kind of patient come along very often. Only one doctor in their neonatal intensive care unit (NICU) had seen another case of HME.”

The medical team explained the traditional textbook approach – waiting a few months until Bella was big enough and strong enough to survive dramatic surgery to remove half of her brain.

“The standard practice is cut her open and do a full hemispherectomy when she was at least 3 months old,” says David Getting. “Her seizures were so bad, her quality of life would have been negatively impacted if we waited.”

By that point, Bella’s electroencephalogram (EEG) indicated that she was experiencing 20 to 40 seizures per hour, non-stop, despite several seizure medications. Every month delay meant a 10- to 20-point drop in Bella’s IQ.

Grabbing hope with both hands

Dr. Amy had planned to return to Kentucky on Sunday, but providentially all the flights were completely full. She opted for the Monday afternoon flight. As the Gettings rocked Bella and spoke with the Des Moines care team, Dr. Amy quietly searched websites for the nation’s top hospitals, looking for options. She found a story about Darcy, an infant born with the same rare brain disorder whose seizures were stopped by Children’s National Hospital’s innovative clinical approach. Dr. Amy found an email address and quickly was connected with Dr. Chang, director of the Neonatal Neurology and Neonatal Neurocritical Care Program.

The two physicians had a long conversation while Dr. Amy was still at the hospital in Des Moines.

“Our friend Dr. Amy said ‘I really feel like this is it. This is Bella’s best shot at a normal life,’ ” David Getting says.

Dr. Chang then discussed the potential risks and benefits with the Gettings by phone for an hour.

“We had 48 hours to decide, and it didn’t take that long,” Ann Getting says. “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. That’s how we feel about it.” So, Bella flew to Washington, D.C., on a medical transport when she was just 8 days old.

Thinking ‘outside of the box’ to save Bella’s brain

Dr. Chang cut short her vacation and assembled a world-class team that includes experts in epilepsy, interventional neuroradiology, neurosurgery, neuroradiology and neonatology. Together, they have pioneered the concept of carefully creating controlled strokes in the bad half of the brain, rather than physically removing it.

Bella rests in a hospital bed

Monica Pearl, M.D., threads her way up to the major blood vessels into the brain with glue that, once exposed to blood, hardens and blocks off the blood supply to that troublesome brain region.

“It’s very delicate. There’s a lot of coordination between me, our surgical epilepsy team, the NICU, Dr. Pearl and the rest of the team. I am on the other side of the glass with the EEG (which records the brain’s electrical activity) watching how the brain responds with each stroke. We go in with a plan but Dr. Pearl and I are in constant communication, discussing where we will go in next and how much to push in that session,” Dr. Chang says.

Bella received products to prevent or control bleeding. They also kept tight control of her brain temperature, blood pressure, blood sugar levels and sodium levels to minimize swelling.

Over three procedures spaced out over a few weeks, the team triggered several controlled strokes that neutralized approximately 98 percent of Bella’s left brain before she was 1 month old.

“Rather than creating a big hole and removing this abnormal half of the brain that was hurting Bella, we decided to go in from within,” Dr. Chang explains. “It’s no different from an adult patient getting a heart stent - which also is delivered through the bloodstream - except we went up the bloodstream to reach the brain.”

A big question mark over Bella’s future

Ambre and Mark Hauschildt, Bella’s adoptive parents, drove for two days from Iowa to meet their daughter for the first time in mid-October 2018 at Children’s National. Bella was 7 weeks old and barely moved.

Bella sits and plays

“She was very sedated as her brain healed from the procedures,” recalls Ambre. “She didn’t cry. She didn’t have any emotion and, because of the early brain damage, it wasn’t clear if she would ever show emotion. She was just a very quiet, very sleepy, very frail baby with a big question mark over her future. We knew she was ours, and we knew things were going to be OK, but we really didn’t know what we were getting into. That was kind of the beginning of our new life.”

Bella was receiving eight medications to control her seizures and, within a couple weeks, was weaned down to four. Slowly, but surely, she started perking up.

“She was smiling. She was crying. She was learning to suck her thumb. She was looking at us; her eyes would follow us. She was very much doing normal baby things: being fussy, wanting to be held - when she didn’t care before,” Ambre says.

A physical therapist worked with her to keep Bella’s joints supple since the seizures had weakened her right side, gauging what movement she could manage, moving her arms and legs and stretching muscles so they wouldn’t tighten.

Now back in Iowa, Bella is down to just three medications and gets gussied up for home visits by physical, occupational and speech therapists. She moves the professionals to tears.

“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 adds. “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.”

Bella can say “mama,” “dada,” “hey” and “hi,” punctuating the salutation with a wave. She blows kisses and is learning to give them too. She plays patty cake.

“I think that’s her most favorite thing. She claps and claps and claps. She loves it. She claps like any other kid can clap,” Ambre notes. Socially, Bella appears to be on track. Her only prominent delays involve motor skills.

Almost like a birthday gift to herself, when Bella turned 1 year old she hit myriad milestones, sitting on her own with no transition. Once she couldn’t sit, then she could. Once she couldn’t roll over, then she could. Braces caress her ankles and feet to stabilize her very flexible ankles.

“She loves to stand,” Ambre says. “She is learning to take some steps. She is taking off in every way. Her therapist will be in tears. She comes every two weeks, and Bella makes such progress we’re emotional talking about it.”

Fed by a g-tube, Bella is working on eating, nibbling at finger food and putting everything else in her mouth, be it a pacifier or her toes.

“Ninety-eight percent of the time, she’s smiling and giggling and happy, which is the best feeling ever: Never knowing if she would cry, to see her laugh. It’s incredible knowing what she’s been through. Just knowing every day she’s getting better and better, it’s just a feeling I can’t describe,” Ambre says. “Surgery is not even on our radar. It’s been such a huge turnaround just seeing how much this procedure changed her life.”

Like other proud grandparents, the Gettings are capturing Bella’s astonishing progress through hundreds of photographs. And they count their blessings.

“We thank God for leading us to Dr. Chang and Dr. Pearl,” Ann Getting says through tears. “It was truly a miracle how it happened. We will be forever grateful to the Children’s National NICU team for their skilled and compassionate care. We believe they have given Bella Grace the chance to develop to her fullest potential.” 

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