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CHOC: CRITICAL CONDITION

Pro and Con, Parents Passionate About Controversial Doctor

Medicine: In dilemma for CHOC, some entrust their gravely ill children only to him, while others are fiercely critical.

May 21, 1997|LEE ROMNEY and BARBARA MARSH | TIMES STAFF WRITERS

Parents are passionate about Dr. Mitchell S. Cairo.

Some entrust their dying kids only to him, and say they won't support Children's Hospital without him.

"He saved my son's life," said Gloria Kuhs, mother of a child diagnosed by Cairo with a rare chronic blood disorder. "That's why we went to CHOC and that's why we stay at CHOC."

Others are fiercely critical.

Cheri Barbour says she won't let Cairo near her daughter ever since he abruptly stopped the little girl's medication for rare tumors without consulting the girl's primary doctor--a move Cairo said he made in the child's best interest.

"I know parents who absolutely love the guy. He doesn't say stop and he doesn't say die," said Barbour, a mother of seven. "The bottom line about CHOC is I trust them with the life of my child, which is saying a lot. I do not trust Cairo with any of her care."

Cairo, once the hospital's star researcher, has been stripped of numerous responsibilities there and is fighting to clear his name after a federal audit found problems with research he oversees.

It is unclear what prompted the string of sharp actions against him. But parents have weighed in.

More than a dozen supporters formed a group in February to protest Cairo's demotions and demand answers from hospital administrators.

The group has fired off letters to the hospital's board of trustees and met with the acting chief executive to discuss their support for Cairo.

"Now we expect a response," said Shirley Quackenbush, whose 3-year-old son, Marshall, is under Cairo's treatment for neuroblastoma. "And we will make decisions about our child's care based on that response."

For these parents, Cairo gave hope where others wouldn't.

"He will fight with every last breath," said Dan Rosen, father of a 14-year-old boy who died of a form of anemia last fall after receiving two bone marrow transplants and one umbilical cord blood transplant in four months. "If there is the slightest bit of hope, I believe he will do anything he can, he will try anything that's available to give you that last chance.

"I believe that without Dr. Cairo, we would have had one transplant. And if it didn't work, [the message would have been] 'Sorry, go home and die.' "

Cairo's vocal supporters say they are privately insured and able to travel to nationally known centers for treatment. They choose, however, to remain close to home, because of Cairo.

"If something were to jeopardize the situation of Dr. Cairo at CHOC, there is no reason for us to have our children there," said Kim Weiner, whose 6 year-old daughter has responded well to treatment for a form of leukemia under his care. "I would take her somewhere else, or wherever he would be."

But one family whose son was treated by Cairo has formally complained to hospital officials that the physician pressured them to go forward with an umbilical cord blood transplant that they would have refused had they understood the risks.

The differing parental views of Cairo to some extent reflect the delicate ethical world of pediatric oncology, in which doctors frequently are presented with thorny treatment dilemmas.

When is it best to let a child die rather than suffer painful therapy that only slightly improves the chance of survival? How hard should a physician advocate experimental treatment?

According to Adam Lawson's parents, who filed the complaint, the 21-year-old Anaheim youth suffered from adrenoleukodystrophy, a genetic neurological disorder that is degenerative and fatal, a form of the disease made famous by the movie "Lorenzo's Oil."

His father and stepmother, Shelby and Sue Lawson, said he seemed stable for a long time. But he had trouble staying on the low-fat diet crucial to the maintenance of his health, downing a cheeseburger while cruising with his friends, then lying about it when confronted.

The parents said that their son's speech was slurring and he had trouble concentrating in college classes during the summer of 1995.

After a seizure, Adam, who was living with his mother, Karan Lawson, was referred to Cairo for a bone marrow transplant by his endocrinologist, his parents said. Here, the Lawsons' version of events diverges from Cairo's.

Karan Lawson says Cairo strongly encouraged a cord blood transplant and told her Adam had a 95% chance of making it through. She wrote in a letter of complaint that when she expressed doubt, "Dr. Cairo said if Adam was not admitted the weekend coming, that he'd have to go elsewhere for a transplant."

"[Cairo] wants to be put on the map as the transplant expert," said Karan Lawson, who now lives alone in a small apartment north of Santa Barbara. "Cairo gave me no options. He did not talk about options."

Shelby Lawson had a separate experience with Cairo, but says he also felt pressured. He also wrote a letter of complaint to hospital officials.

In an interview, Shelby Lawson said Cairo told him "he wanted to get Adam in the hospital right away," to avoid losing the cord blood match he had found for Adam.

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