Deep brain stimulation allows child with rare condition to regain more control of her life

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KANSAS CITY, Mo. -- As many as eight in 10 children are born with jaundice, the yellow discoloration in a baby’s skin. When it’s not watched carefully, jaundice can cause brain damage.

Lexi’s bright eyes and infectious smile can light up a room. She’s very alert, aware of what’s going on. She just has trouble communicating.

“Watching her struggle to communicate as a parent is the hardest part because you know there’s a person trapped in here,” said Susan.

Her mom, Susan Haas, said her daughter suffers from Kernicterus, a rare disease. She was born with jaundice. It was left unmonitored, later damaging Lexi’s motor center in the brain.

“One in 100,000 has full blown Kernicterus, which affects muscle tone and involuntary movements,” said Dr. Steven Shapiro, Chief Of Neurology and Kernicterus expert.

The neurosurgeons at Children’s Mercy Hospital were pioneers of deep brain stimulation surgery. Often used to treat Parkinson’s and tremors, doctors are now applying this method to children like Lexi.

“When we turned it on, she instantly had better control of her hands. What’s exciting, which we weren’t expecting, was she was able to hold her head up, move her jaw better almost immediately,” said Dr. Brian Aalbers, a Pediatric Neurologist at Children’s Mercy.

The device is like a pacemaker that is inserted into the stomach. “We use it like a computer to stimulate different parts of her brain,” Dr. Aalbers said.

Lexi had her first DBS surgery at age 7. This past July, she had a second surgery at another part of her brain that yielded even more motor controls.

“She needs to go to college, she needs to have a job and be a part of the community and not spend her life at home,” said Susan of her daughter.

Lexi has aced the national French exam several years in a row. She learned French as means of communication when a speech therapist said it might be easier for Lexi to pick up because foreign languages require a different part of the brain.

Susan hopes with this surgery, Lexi will be able to regain more control over her life.