Hope for Hillary

September 27, 2006
Father's Memoir of His Daughters Courageous Journey
Hillary with Maureen van Stone

At nine years old, Hillary Reston developed a dangerous energy her father describes as "positively thermonuclear." If they turned their back on her for an instant, her parents often found Hillary perched on top of kitchen cabinets, swallowing staples and tacks, smashing glass tables and throwing knives.

"She was out of control, very dangerous to herself," says her father, James Reston, Jr., an acclaimed writer and historian whose books have covered such wide-ranging topics as the Jonestown Massacre, baseball player Pete Rose's fall from grace and the Spanish Inquisition. "We had no way to deal with her." In desperation, in 1990 Reston and his wife Denise Leary brought Hillary to the Neurobehavioral Unit (NBU) at Kennedy Krieger Institute. He documented the family's experiences in, Fragile Innocence: A Father's Memoir of His Daughter's Courageous Journey, (Harmony Books, 2006).

Unlike most NBU patients, Hillary never had an official diagnosis such as autism. She appeared to develop typically until she was about 18 months old, when she contracted a high fever. Once the fever broke, Hillary lost the ability to speak and comprehend language, developed intractable seizures and experienced kidney failure.

"We watched Hillary's sessions through a window for months," Reston says. "All we saw at first was data-taking they were trying to figure out what made Hillary tick. In time, they discovered new ways of disciplining Hillary that were effective without being cruel."

Although Hillary's behavior became significantly more manageable after her NBU discharge, her deteriorating medical condition led to a new behavior problem relating to her kidneys failing. As Hillary became dependent on nightly dialysis, she would often disconnect or bite through her dialysis tube, which put her at risk for life-threatening peritonitis. "It was nervewracking for us," says Reston. She also began dropping to the ground whenever she objected to a demand.

Hillary returned to the NBU in 1997, where therapists tried several techniques designed to prevent her from disabling the tube, from installing a dummy tube to putting pepper on the line. The instances declined markedly, but remained somewhat of a problem until Hillary received a long-awaited kidney transplant in 2002. The team had more success addressing the dropping issue providing Hillary with a stool to rest on when she handed a specific card to her caregiver.

The new techniques made a dramatic difference in Hillary's quality of life, and in her family's. "Her final year in school was just glorious," Reston notes.

While relatively few NBU patients are readmitted, the risk for continued self-injurious behavior is fairly high. "Individuals with self-injury often have difficulty developing new skills, so as they are faced with new challenges, there's a strong possibility of the behavior problems becoming a life-long issue," explains Patricia Kurtz, a behavioral psychologist who worked with Hillary and who directs Kennedy Krieger's Neurobehavioral Outpatient Services. "That's why the NBU is so committed to providing ongoing outpatient care in the community."

Today, Hillary is nearly 25 years old and while she still experiences seizures, her overall health is good. "Hillary's involved in a variety of activities every day, from her job with the local school system, to bowling, to music, to future therapeutic horseback riding," says Reston. "Life is a lot easier for all of us now."

Kennedy Krieger Institute Announces Retirement of President and CEO

Dr. Gary W. GoldsteinThe Institute’s board of directors is conducting a national search and is expected to name a new CEO in the coming months.
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