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When one kid must come first

Siblings of sick children learn empathy but, researchers find, at a price.

July 17, 2006|Melissa Healy | Times Staff Writer

AT an age when many siblings will come to blows over an uneven division of ice cream, Joe, Vinny and Angelo Todaro have learned that, in life and in families, fairness is a complicated thing. It got that way on a spring afternoon in May 2000, when their now 7-year-old brother, Nino, was diagnosed with a rare and life-threatening genetic disorder.

Since then, Joe, 13, and Vinny, 10, have learned to take 4-year-old Angelo out for a bike ride when Nino's fevers spike to 107 and his legs and hips are so wracked with inflammation that he cannot get up. On those bad days, they have learned they should get their chores done without being badgered and find a ride to their soccer game or track meet with a teammate. And they have learned that though they can wallop him at video games on a day when Nino's feeling well, letting him win when he's too sick to walk is the right thing to do. No, life's not fair -- and neither is the division of time and attention that their mom and dad, Lori and Tony Todaro, spread across all four sons when one of them is in a fight for his life. But neither is it fair that Nino is so sick.

It's complicated for these kids. Yet it's simple, too.

"It gets frustrating, kind of, having to do things for Nino all the time," says 13-year-old Joe with a shrug. "But," he adds simply, "we have to take care of Nino first."

Children like the Todaro boys are the unheralded champions -- the forgotten survivors -- of siblings with childhood illness. Long invisible to the healthcare system, their special needs and challenges are now the subjects of growing attention and new research. They remain uncounted, but their ranks appear to be expanding.

In the United States today, roughly one child in 10 has a serious disability or disease that impairs his or her ability to communicate, learn, get around or take care of himself or herself. Not so many years ago, a large fraction of these kids would have died quickly or in early childhood -- or have lived their lives apart from their families, in institutional care. But more effective treatments for childhood diseases and a society more committed to inclusion of those with disabilities have made these children's lives longer and richer.

At the same time, those trends have created a generation of siblings whose childhoods will have revolved around the intensive needs of a sick or disabled brother or sister. They are the tag-alongs, the left-behinds, the kids who actually wait in a doctor's waiting room -- not for their name to be called but for a sibling to come back from treatment. Like the Todaro boys, they learn empathy for a sibling -- and often fear for his or her life -- at an age when most children will cry foul at the smallest slight.

With new therapies driving long-term survival rates for childhood cancers to 75%, for instance, these are the siblings who will be ferried back and forth to treatment centers and live with the worry of recurrence. With the parents of special-needs kids struggling to get them services and care for them at home, these are the brothers and sisters who will pitch in -- and step aside.

Joe, Vinny and Angelo's needs are dwarfed by those of a brother with periodic fever syndrome, a disorder that affects the immune system. Other kids' childhoods are rocked by a sibling's diagnosis of cancer or shaped by the lifelong needs of a sibling with Down syndrome or cerebral palsy or autism.

Compared with the heroic struggle of a sibling battling illness, their wellness -- their very normalcy -- makes many of these children, by their own estimation, undeserving.

"I used to have fantasies of breaking a leg or an arm -- just something big enough to matter," says Elizabeth DeVita-Raeburn, whose brother, Ted, battled aplastic anemia, a rare immune deficiency, for eight years before dying when he was 17 and she was 14. "Here were these noble people, these noble children who were struggling against illness, and here I was, embarrassingly, offensively healthy. I felt like the not-important one."

DeVita-Raeburn went on to write a book, "The Empty Room: Surviving the Loss of a Brother or Sister at Any Age," about her own experience and those of others who have lived with the long-term illness and loss of a sibling. Now 40, she says she "worshipped" her older brother, and for years secretly believed that a wish she made following a spat with him had brought on his illness. "I didn't question whether I had a right to resent" the attention lavished upon him, says DeVita-Raeburn. "I did feel that my feelings and needs were not very important and certainly didn't measure up to my brother's. I don't remember feeling resentful so much as hurt and depressed."

Early research suggests that these healthy siblings are, as a group, more likely to exhibit symptoms of anxiety and depression than children without sick siblings, that they are more likely to have social adjustment problems, and to suffer from physical complaints such as headaches and stomachaches.

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