Baltimore Press

Incredible Drama of Losing Half a Mind

Dr. John Freeman of the Johns Hopkins Children’s Center said yesterday that the tragedy of 15-year-old Amber Ramirez will end as it began, with a limp. The teenage girl from Lincoln, Neb., who had half her brain removed on July 13 will leave Hopkins early next week to return to Nebraska, as long as a recently discovered infection remains harmless, as Amber’s doctors believe it will.

Last weekend, a suture loos­ened at the crown of Amber’s skull. The mark was just above the area where her brain surgeon, Dr. Benjamin Carson, had cut through the bone and cranial lining last month during a nine- hour operation.
She was returned to Johns Hopkins for observation and treatment. There was no sign of the infection in the bone, the primary concern of the doctors, said Dr. Freeman, director of the Pediatric Epilepsy Program at Johns Hopkins Children’s Center.

Meanwhile, Amber is scheduled to return to Mt. Washington Pediatric Hospital today to continue with her physical and verbal therapies. She suffered from Rasmussen’s encephalitis, a viral-like disease that eats away at the brain matter of inflicted children as young as a year old. attack them as if they were an infec­tion themselves. The brain, in effect, becomes its own disease. That it only attacks one side of the brain, still mystifies the medical establishment after years of research.

Often misdiagnosed as epilepsy, the disease inflicts seizures that wors­en as the child grows older. Some medications can treat the seizures tem­porarily. Rasmussen’s encephalitis only can be cured with what Dr. Freeman called “a crude and radical approach,” a hemispherectomy—the total removal of the inflicted half of the brain.

It is the doctors’ belief that Amber will always have a small limp and limited use of her right arm. According to a paper issued by the Johns Hopkins Children’s Center, “Surgery does not appear to decrease a child’s intellect. Intelligence some­times improves. This is due, partly, to a lack of seizures and elimination of anti seizure medication.”

Amber’s language skills are expected to return, as well. Hopkins has performed 82 such procedures.

Many children who have the pro­cedure are 5 or 6. Amber, at 15, was one of the oldest patients to have a hemispherectomy. She knew what her choices were and the personal cost involved. Without surgery, her debili­tating seizures would increase, doc­tors said, in volume and intensity. Her ability to think would be forever be corrupted, and she would likely die.

The first sign of the disease mani­fested in a limp when Amber was 9, in 1993. Once the disease was diag­nosed, it took several years for Amber and her parents to make the decision.

Amber knew that when she awoke the morning after the surgery, the right side of her body would be para­lyzed, her vision would be impaired, and that she would not be able to speak or write.

She made the choice, willingly. But it is another matter altogether to wake up with only half a brain.

Beyond the minor infection, Amber is doing well medically.

As to how well Amber is adapting, “she is doing as one would expect by taking away what a teenager cherish­es most, speech,” said Dr. Freeman.

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