When one kid must come first

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.

They’re also more likely to carry a heavy burden of guilt and resentment into adulthood.

They are kids like Yulyana Torres, 10, of Providence, R.I., whose family calls her “the little mom” to her 7-year old brother Dario, who is severely autistic. They are kids such as 14-year-old Jenna and 8-year-old Samantha Bordy of Los Angeles, whose family rituals of craft time with Mom and pancakes on Saturday morning were suddenly altered when their 16-year-old sister Shayna was diagnosed last November with Hodgkin’s disease.

And they are kids like 12-year-old Maison Ayers, whose 6-year-old brother Matthew has spent four years in treatment for a rare genetic condition that makes his white blood cells unable to fight off infection. Maison has twice donated stem cells in a bid to treat her brother’s disease and she still treads carefully when voicing the most normal of sisterly complaints -- a wish to be left alone every once in a while by a pesky little brother.

“Sometimes I think about how he’s frustrating me and I’ve been mean to him. And then I think he could be gone the next day and I should spend all the time I can with him,” says Maison. In their home in Carlisle, Pa., Lori Todaro struggles to preserve normalcy, prizes her children for their separate gifts, and shuttles constantly to attend whatever soccer games, track meets, spelling bees and school parties she can make.

But she is acutely aware of the vacations and toys she and her husband can no longer afford because of Nino’s illness and the time they must spend away from home. She has seen many other moms of sick kids focus all of their attention on the one in treatment, and she sees “sadness, resentment” in the eyes of their siblings. She doesn’t want it to be that way with her boys -- yet she acknowledges she is not always successful.

“I’ve heard, ‘Mom, you’re just spoiling him because he’s sick,’ ” says Lori Todaro. “And I say, ‘You know what? When you can’t walk across the room, you talk to me!’ It’s probably not nice. But I do it.”

At one point or another, siblings of sick or disabled children all feel the loneliness of knowing that in the scramble to attend to a sibling’s greater needs, adults have either overlooked their pain or deemed it unworthy. Finding comfort in friends seems elusive too, for few other children could possibly understand the enormity of their concerns.

And if empathy is a gift these children develop early, there is a dark side as well: Worry settles upon them at a young age.

Periodically briefed by their mother on their brother’s medical situation, Joe and Vinny worry that the drugs suppressing the inflammation that overtakes their little brother’s body have stopped working as they should. They worry that they will hear the heartbreaking sound of their mom crying in the night.

This complex picture of these children’s lives emerges over and over -- both in the worried hopes expressed by their parents and the observations of mental health professionals.

On the surface, says Debra Lobato of the Bradley Hasbro Children’s Research Center in Providence, R.I., these children look like any other child. But as a group, they are delicately poised on a knifepoint. “It’s kind of a 50-50 proposition as to whether that person will say this [a sibling’s illness or disability] is the most positive, meaningful part of my life or this is the straw that broke the camel’s back.”

Lobato says that even after tight family bonds give way to adult independence, the effects linger in myriad ways. “I’ve had older teens say that the way a friend reacts to a brother or sister with a disability allows them to decide whether to have a lifelong relationship,” Lobato says. DeVita-Raeburn says that, for kids who grew up valued and praised by adults for their selflessness, acknowledging one’s own emotional needs as an adult can be nearly impossible.

“The idea that I had my own needs was something I really had trouble wrapping my mind around,” DeVita-Raeburn says.

And all echo Lori Todaro’s observation.

“There’s a sense of lost innocence,” she says, reflecting upon the effect that Nino’s illness has had on her other sons. But, she adds, “there are so many other things that compensate” for that loss, some that may not show up until her boys --all four of them, she hopes -- are men.

A new focus of support

How they will turn out, these well siblings, is a new concern of healthcare providers -- and a matter of growing research.

At children’s hospitals across the country, programs are popping up that aim to give the siblings of kids with serious illness or disabilities a safe place to vent and share their experience, and learn more about a brother or sister’s condition.

It was in one such sibling program that Yulyana Torres confronted the fact that there is no cure for the autism that makes her younger brother Dario remote, easily overwhelmed and sometimes aggressive. But knowing more about her brother’s condition, and talking with kids who cope with similar challenges, she says, has made her understand him more and love him better. The family circumstances of healthy siblings vary widely, as does the nature of a sister’s or brother’s condition. Notwithstanding those differences, researchers find similarities in these siblings, the psychological stresses they face, and the lessons that some take away from the experience.

“They often develop aches and pain because they are hurting. Their pain is very real, but it’s invisible,” says Lori Wiener, who coordinates the psychosocial support and research program at the National Cancer Institute, which recently published a workbook for the siblings of children with cancer. “For a lot of these siblings, there’s a great feeling of losing their brother or sister, but also of losing their parents, because they’re going to be emotionally unavailable to them.”

They also fear, as DeVita-Raeburn did, that something they did or said may have caused a sibling’s illness or prevented treatment from working, or suffer from survivor’s guilt if a sibling has died in childhood. “It’s a sense of being unfairly spared.... Yes, you’re glad you’re OK, but on the other hand, why? Why should you be able to go on, especially when these sick children, who are imbued with this saintliness, this nobility, do not?”

Most carry burdens of responsibility unusual for children. Often, even young children are called upon to do more, including to care for a sibling with a disability or an illness while parents work.

Specialists in the care of families coping with a child’s illness or disability note that for siblings, taking on unusual responsibilities can bring a sense of effectiveness. And “it’s an opportunity to have kids rise to the occasion of compassion and empathy -- to understand that the world really doesn’t revolve around them,” says Elyse Levin-Russman of the siblings program at MassGeneral Hospital for Children.

But particularly where a family’s resources are strained by a child’s condition, siblings are often called on for more than what experts consider healthy -- they are children that have been “parentified” by a sibling’s condition. While often unavoidable, parents who rely on children to translate therapeutic instructions, provide child care and serve as family emissaries to authorities are thrusting too much responsibility on siblings, say experts. The result could not only put the child with special needs at risk, but also breed resentment and anxiety on the part of the sibling put in charge.

Jose Luis Hernandez, the father of 11-year-old Edson Hernandez, says he sees many Latino families that do this -- in part because they are reluctant to reach outside their families for help. He says he and his wife have sought to shield their 15-year-old daughter Alexa from feeling responsible for her brother’s safety, even though that has meant putting double locks on the doors so that Edson does not wander away.

Hernandez, who runs a support group for Spanish-speaking families with autistic children in Anaheim , says it is often hard to convince parents that their other children need special attention too. “We tell them, ‘You know what? You have to treat your other kids. Sometimes they need you more than the autistic one,’ ” Hernandez says.

Indeed, a 1995 study written by Lobato and published in the Journal of Family Psychology warns that, for Latino families in particular, siblings of sick or disabled children may be at greater risk of “internalizing psychological problems” than children in similar circumstances. Comparing a group of 20 Latino siblings of children with disabilities with a similar group of non-Latino children, Lobato found a greater incidence of anxiety and depressive symptoms among the Latino children. The emphasis on shared family responsibility that characterizes Latino families may place a greater burden of care and worry on these siblings, Lobato says.

Advances in medicine also have put new pressures on siblings in many cases. In stem cell transplantation, a therapy used to treat a growing number of childhood illnesses, a sibling’s bone marrow cells often turn out to be an excellent match for the patient. In such cases, a sibling is asked to endure the risk and discomfort of a medical procedure that can mean the difference between a patient’s life and death.

When the resulting marrow transplant appears to cure a patient, says Wiener, the donor sibling can experience a heady sense of effectiveness -- he or she has saved the day. When it doesn’t,”it’s very difficult,” Wiener says. “The sense of responsibility is huge.”

Maison Ayers has had it both ways. Her bone marrow was found to be an ideal match for her brother’s, and twice, physicians at the National Institutes of Health, where her brother is treated, have asked if she would be willing to donate those stem cells to him. The first time, Maison’s stem cells failed to halt the march of Matthew’s illness. The second time, they appear to have worked. Today, 7-year-old Matthew has grown back hair lost in chemotherapy. Healthy and energetic, he can keep up with his sister, and likes to trail close behind.

Maison doesn’t focus much on the discomfort of the procedures, or the swelling and bruising she endured after her stem cells were extracted. She remembers the gravity of the social worker who asked her about her willingness to donate and finds it hard to fathom why on earth she would say no, “because it really isn’t a big deal with me.”

Generous lessons

For Joseph and Vinny Todaro, that’s the kind of unselfishness that has become second nature.

When Vinny overheard his mother fretting recently about the cost of gasoline for the two-hour trip to Nino’s treatment, the 11-year-old sprinted upstairs to grab a fistful of dollars saved from chores. When Nino resisted taking the pills that are part of his treatment, his two brothers -- with exaggerated enthusiasm -- pretended to be snarfing the yummy medicine. When someone stares too long at Nino or says something unkind to him, Joe will go over and give them a piece of his mind.

It’s complicated. But it’s simple too, says Lori Todaro. “I would not wish this on anybody,” least of all her own kids, she says. But the journey has taught her healthy boys some of life’s most important lessons too, and they are better for it, she says.

“They don’t see wheelchairs or scars or bald heads; they don’t judge,” when they meet other sick or disabled children, says Todaro. They have learned kindness and compassion -- and have had plenty of opportunity to practice it. And they have learned, she says, “to take nothing for granted,” even another day with a beloved -- and sometimes pesky -- little brother.

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Support for brothers and sisters

The siblings of children who are ill or have developmental or physical disabilities are a new focus not just of researchers but also resources. Here are a few:

* The National Cancer Institute has drafted a new book and website for the siblings of children with a cancer diagnosis. It has information, resources and space for recording feelings. Go to www.cancer.gov/cancertopics/When-Your-Sibling-Has-Cancer.

* The Sibling Support Project is a national program for the brothers and sisters of children with special health and developmental needs. It aims to build peer support groups and educational opportunities, and runs a listserv just for kids. Go to www.thearc.org/siblingsupport or call (206) 297-6368.

* The University of Michigan Health System offers resources and information for the parents of kids with special needs, including resources for siblings. Go to www.med.umich.edu/1libr/yourchild/specneed.htm.

* The Child Life Council Inc. is an association of specialists, most of them hospital-based, who work with families and children to master challenging life events. These specialists usually run sibling programs. Its website lists regional and local child life groups. Go to www.childlife.org or call (301) 881-7090.

* Siblings for Significant Change is a national network that builds mutual support for the siblings of kids with special needs. It trains siblings to be advocates for themselves and their families, provides networking for support and socializing, a newsletter, phone network and local chapters. Call (800) 841-8251.

* The Sibling Need and Involvement Profile is a guide that can help parents talk to their children about the challenges an ill or disabled sibling faces. Call (614) 292-7550 for information or to order.