“There’s not much that Nicholas can’t do,” his mom, Patti Capano, 36, says brightly. Except walk, swallow, and breathe.
Born with spina bifida, a condition in which the spinal cord is not enclosed within the backbone, Nicholas, 9, a third grader in Lynn, needs a weelchair to get around, a ventilator to breathe and tubes to get food to his stomach.
And when the occasional complication lands him in New England Medical Center – as an infection and surgery have for the last two weeks – he’s “a brave little kid,” she adds proudly.
So are his brothers, Alexander, 7, and Jonathan, 4. If their mother has to spend the night in the hospital, their father, Mario, 40, a lawyer, takes the home shift. “They have always slept in their own beds,” she says. “They’ve always had a goodnight kiss and a good morning kiss from their dad.”
Sure, Nicholas’ disability has had a “great impact” on the family, adds his dad. But by “great,” he means it’s made the other kids “more caring. . .more mature. Nick is a blessing.”
Nearly 7 million American children have a serious medical illness or disability such as diabetes, cancer or head injury, according to recent congressional testimony. And the need to devote family resources, both emotional and economic, to their care clearly has a huge effect on parents and healthy siblings.
But while growing up with a sick brother or sister can put siblings at higher risk of anxiety and other problems, it can indeed make them more mature and empathic, says Suzanne Bennett Johnson, a psychologist at the University of Florida. “It isn’t necessarily all bad.”
It certainly wasn’t for Rachel Cobb, now 24 and a researcher at Cambridge Community Services, a social service agency. Rachel was 2 when her brother Ethan was born. Ethan’s troubles, including a severe communication disorder and for a while, hyperactivity, “snuck up on all of us,” says their mother, Poly, a Cambridge resident and advocate for people with disabilities. But her attitude was, “Okay, we’ve got this thing. Too bad. It is too bad. . . It changed the world for us, but it is not the end of the world.”
“I never felt jealous or abandoned or upset,” adds Rachel. “I was very aware of how different he was and that that was not necessarily liked by the real world.” But she was a full participant in Ethan’s care: “That made a big difference.”
The experts agree.
“There’s almost always something a sibling can do” to help a sick brother or sister, says Dr. James Perrin, director of general pediatrics at Massachusetts General Hospital.
Even something as simple as reading aloud, fixing food, or bringing assignments home from school can benefit healthy siblings tremendously. Not only does it offset the abandonment some siblings experience as parents focus on the ill child, he says, but it builds competence and helps “combat the powerlessness” many healthy kids feel.
Still, there are limits. When it’s a younger sibling who’s sick, the “big danger,” says Alexandra Quittner, an Indiana University psychologist, is that the older child may “take on more responsibility than they should. . .especially if that child is a female.”
The idea “is to be engaging, not exploitative,” says Gerry Koocher, chief psychologist at Children’s Hospital in Boston, a balancing act parents can aim for with statements like, “Would you like to be helpful in something I need to do for your brother or sister? You don’t have to do it, but it would be helpful.”
Staying sensitive to a child’s complicated feelings – from anger and jealousy that parents spend so much time with the other sibling to guilt, often indirectly expressed, that their own bad thoughts or deeds caused a sibling’s illness – is key.
This holds even in situations where parents might assume the healthy child is doing fine because she has been so heroic – doing something like donating bone marrow to a sibling with leukemia.
In a study of 44 kids published in Developmental and Behavioral Pediatrics last summer, Dr. Wendy Packman, a psychologist at the University of California at San Francisco Medical Center, found – to her surprise – that siblings who donated marrow wound up, regardless of age, more anxious and with poorer self-esteem than siblings from similar families who were not donors.
The donors had “a constant fear or dread that the brother’s or sister’s disease might return. . . that their bone marrow wasn’t good enough,” says Packman, even though at school the donors showed more “leadership skills and social competence.”
And although many healthy siblings do fine psychologically, some research supports parents’ concern that the time demands and emotional stress of caring for a sick child can leave their other children relatively deprived.
Quittner has found that mothers think they give their children equal attention but the healthier child often winds up with less.
Still, there are ways to give healthy siblings what they need, says Sister Clare Walsh, director of pastoral care at NEMC’s Floating Hospital for Children. Like a growing number of hospitals, Floating runs a special program for siblings of sick kids, called VIBS – Very Important Brothers and Sisters.
If one child is hospitalized, Walsh says, parents can “at least have contact by phone” with kids left with relatives. Whenever possible, it also helps – except during flu season – for healthy kids to go to the hospital to see what goes on.
Most important, says San Diego psychologist Pat Deasy-Spinetta, who has studied families of chronically ill children for 30 years, is to keep healthy kids in the loop. If you do, she says, “over the long haul, kids will come out okay.” In fact, she adds, many siblings of chronically ill children go on to medical or nursing school.
Keeping everybody part of the team has clearly worked for the Capano family. Patti Capano puts it this way: “All three of my children are the nucleus of the family.”
How to help siblings
- Assume the healthy child may be jealous of the sick one, may fear getting sick herself, may feel her own thoughts or deeds caused the illness, and may feel excluded.
- Explain to the healthy child – in age-appropriate language and as often as necessary – what is wrong with the other child, emphasizing that the illness or disability is no one’s fault.
- Consider taking the healthy child for a doctor’s exam if she seems worried that she, too, has a serious disease.
- Encourage her normal activities – school, parties, sports – and give her acclaim for her strengths and achievements.
- Recognize that hozpitalizations can be traumatic for both sick and healthy siblings. Encourage visits. But don’t force the healthy child to touch the sick one, and prepare her to see her sibling surrounded by equipment like tubes and needles.
- If you can’t take care of the healthy child yourself, tell her where she will sleep, who will feed her and take her to school or day care. Call often if you can’t be with her.
- Be honest if she asks how long her sibling will be hospitalized. If she doesn’t worry aloud her sibling might die, you can raise the subject, saying, “I bet you’ve been thinking about that.” And answer truthfully: “We don’t know, but we’re trying to find out. It’s okay to be scared – we all are.”
- Be realistic. It’s unfair, for instance, to expect a healthy child to waken a sick one from a coma.
- Without being exploitative, include a healthy child in the care of the sick one. For little ones, this may mean sending a drawing to the hospital or choosing a photo for parents to take in. For older kids, it may mean entertaining the sick child and sometimes, helping with hands-on care.
- Use “people first” language to keep the child, not the disease, front and center. Don’t say, “Johnny is asthmatic.” Instead, say, “Johnny has asthma.”