Medical Mysteries

Pediatrician Looks Past The Blame

By Sandra G. Boodman
Special to The Washington Post
Tuesday, October 21, 2008

Kathy Rivers thought she had become accustomed to the jaundiced judgments of other people.

A pediatrician by training, she knew that friends and some fellow physicians thought she was somehow responsible for the perplexing illnesses of her three children. Even so, Rivers said, she was taken aback when a pediatric neurologist at Johns Hopkins accused her of exaggerating, or fabricating, their symptoms, which included migraines, seizures, vertigo, severe digestive problems and chronic infections.

"He basically said he thought I had a psychological need to have sick children, that I was making it up and that I didn't need to come back," Rivers recalled of the 2004 appointment, which left her stunned, then resigned. "Too many other docs had already blown me off, or thought I was crazy or medical-attention-seeking," but none had been as unvarnished in their views. Rivers decided she needed to stop dragging her kids to doctors searching for a why and focus instead on coping with what was.

Ironically it was the specialist's accusation -- for which he later apologized -- that proved to be a turning point in a largely fruitless, decade-long quest. After Rivers told the children's trusted pediatrician, Marcia Schwartz of Columbia, about the incident, Schwartz asked her a question: Would Rivers take her children to one more doctor?

The Ellicott City mother reluctantly agreed to see Carol Greene, director of the pediatric genetics clinic at the University of Maryland Medical Center. It was Greene who played a pivotal role that led to a definitive diagnosis for Emily, now 16, the most severely ill of Rivers's children, and revealed a likely cause for the baffling medical problems that affected 9-year-old John and his older sister, a college sophomore who has milder symptoms. Emily's diagnosis raised questions in Rivers's mind about some of her own problems -- including migraines, vertigo and muscle pain -- that had originated in childhood.

The odyssey of Kathy Rivers and her husband, Tom, who works for the Navy, began in 1992 with the birth of their second child, Emily. At that time their first child, then 3, was experiencing migraines, extreme hyperactivity and strange vomiting episodes that left her disoriented. But she was developmentally advanced, and her episodic difficulties paled in comparison to Emily's, which consumed her parents' attention.

Emily was born with a devastating disorder called hydrops fetalis, which involves a buildup of fluid around vital organs including the heart. The problem surfaced during the 29th week of Rivers's pregnancy, apparently after exposure to a virus. Typically, fetuses that develop hydrops die before, or shortly after, delivery.

"I was sent home to wait for the baby to die," recalled Rivers, who was put on strict bed rest for the duration of the pregnancy and hoped her baby would survive. She did; Emily was subsequently found to have severe cerebral palsy, brain damage and multiple organ dysfunction.

Rivers said she and her husband vowed to give their daughter "the best life we can possibly give her."

That was no small undertaking, even for a pediatrician. Emily developed uncontrollable seizures, endured repeated infections and hospitalizations, and had to be fitted with a feeding tube. She cannot sit up, does not speak and requires round-the-clock care. Her mother describes her as "a happy, social person."

When John was born in 1999, the couple faced a new set of obstacles. He had severe digestive problems, epilepsy and poor muscle tone and was so irritable that he screamed for hours. Shortly after his second birthday, he was given a diagnosis of autism.

"A lot people at that point said, 'There's got to be something wrong with that family to have all these sick kids,' " Rivers recalled. John's autism diagnosis was especially devastating, she said, and strained the couple's marriage.

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