Archive for Tuesday, December 18, 2001

Salina baby lives with just half a brain

December 18, 2001


— Gretchen and Cliff Meinhardt's 10-month-old son only has half a brain.

Since surgeons removed the right half of his brain, Raef has been able to do simple things he couldn't do seven weeks ago reach for his toys, sit unassisted or pull himself into a standing position.

Before the surgery, Raef's 16-pound body stiffened with as many as 300 seizures daily, despite medication, stalling his development and halting his growth.

"Developmentally, he had shut down," Gretchen Meinhardt told The Salina Journal for a story that ran Sunday. "He was about two or three months, developmentally, through this whole period. He was long and thin. He didn't gain any weight between June and November."

Plus, because the seizures caused Raef to stop breathing, they were potentially deadly.

The Meinhardts, who adopted Raef at birth, consulted neurologists and tried different medications. They enrolled Raef in the Infant/Child Development Program at Salina Regional Health Center. But Raef didn't improve.

It was the hemispherectomy performed at Miami Children's Hospital that helped.

"There are still times I sit there and think, 'I can't believe we had this done,"' Gretchen said. "But he's just doing so well."

Since the surgery, Raef hasn't had a seizure, and he is gaining weight.

But the Meinhardts still don't know if Raef will remain seizure-free. They don't know how the hemispherectomy will affect Raef's physical and intellectual growth and development.

Pathologists also have said the tissue removed from Raef's brain showed signs of cancerous cells, and a pediatric oncologist in Kansas City suggested last week that the Meinhardts consider chemotherapy. Gretchen said she and Cliff just try to take one day at a time and hope for the best.

"There are no guarantees with anyone," she said. "We just happen to have more of a reminder of how fragile life is. We just have to enjoy the time we have with him."

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