When a Sibling Has a Serious, or Even Fatal, Illness

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Rivers Schwenn is only 16, but she says she already knows that she never wants children.

It’s not that she doesn’t like kids. She does. Lots. But after spending the last year and a half watching her 9-year-old sister, Parker Monhollon, die of cancer, the thought of witnessing another child go through that is unbearable.

Rivers Schwenn applies makeup to her sister, Parker Monhollan.

“I know it’s irrational to think that if I have kids they’ll probably get cancer and die, but that’s where my head goes,” said Rivers, of Silver Lake, Kan. “Cancer was nothing I ever thought about before Parker got sick, but now it seems like a possibility. I don’t think it’s going to happen, but it could.”

During her sister’s illness, Rivers talked to a counselor twice, but it wasn’t for her. And she wasn’t interested in attending camps like Okizu, in Novato, Calif., or the Hole in the Wall Gang Camp, in Ashford, Conn., which offer sessions for ill children and their siblings.

“Sitting around with kids you don’t know and the only thing you have in common is that you have a sibling with cancer seems like a group-therapy session,” she said. Since losing Parker to diffuse intrinsic pontine glioma, an especially vitriolic pediatric brain tumor with a zero percent survival rate, Rivers has thrown herself into her schoolwork and dance — a passion she shared with her sister. “I’d rather be as normal as you can.”

“Normal,” of course, is a relative term when your sibling is seriously ill. About 5 to 8 percent of children in the United States will experience the death of a sibling, but the loss is rarely discussed, and siblings of terminally ill children are often overlooked.

There is also little social support for bereaved siblings. A 2010 study in the Journal of Paediatrics & Child Health of 109 major pediatric hospitals in the United States and Canada found that only 48 percent provided sibling support. A 2014 study of young adults who lost siblings to cancer found that most were still grieving two to nine years later.

Beyond the lifestyle changes and the terror of the unknown, the healthy sibling’s role in the family shifts. Parents are in triage mode, and by default, the well child must take a back seat: Their needs simply aren’t as important, or so the thinking has gone.

“I don’t think my parents checked my homework for a year,” said Rebecca Matz, 12, of Mullica Hill, N.J., whose younger sister, Ellie, now 8, was diagnosed with leukemia in December 2014. After telling her that Ellie had cancer, her parents acknowledged that although it wasn’t fair, the family was going to have to accommodate Ellie until she got better.

Rebecca was jealous. “My mom would say, ‘Ellie’s a very brave child.’ I was like, ‘Stop! She’s getting all the attention. I’m here now, pay attention to me!’”

Not surprisingly, research has found that preteens who had lost a sibling had higher anxiety and depression levels than those who did not. They also had more attention problems, likely a result of their disrupted routines.

Adults who lost siblings as kids also recall feeling as if their own emotions don’t matter, what the family therapist Pauline Boss calls “ambiguous loss,” or loss without closure. Others have labeled it “hidden grief.”

One of the common messages for adolescents whose siblings have died is they have to camouflage their feelings,” said David Balk, a professor at Brooklyn College who has done extensive research on college student bereavement and sibling loss. “They just want the permission to be able to talk about their sister or brother and what he or she meant to them.”

“People do not see the sibling experience during illness or after loss,” said Elizabeth DeVita-Raeburn, 51, whose book, “The Empty Room: Understanding Sibling Loss,” chronicled the death of her 17-year-old brother from aplastic anemia when she was 14. (The 1970s TV special, “The Boy in the Plastic Bubble,” starring John Travolta, was based partly on his story.)

Ms. DeVita-Raeburn remembers the woman who accosted her at her brother’s funeral and told her that she would now have to behave, because “your parents are going through a lot.” “It told me my experience didn’t matter, so you suppress it,” said Ms. DeVita-Raeburn.

Other children withdraw, which is what Ashlyn Bentley, 17, of Scottsdale, Ariz., did when her 9-year-old sister, Abriel, was given a diagnosis of Ewing’s sarcoma two years ago.

“For several months I just shut people out; it’s hard to find people that understand what you’re going through,” she said. “I didn’t talk to people except for my parents.”

After meeting Michael Gillette, a documentary filmmaker with the Truth 365, a nonprofit group that gives voice to children and families fighting cancer, Ms. Bentley decided to do something for siblings. In January, Mr. Gillette and Ms. Bentley began traveling around the country and interviewing siblings on camera. They are slowly releasing the stories online; a full-length documentary is slated for next year.

“The hardest part of being a sibling of a person with cancer is that you’re not able to make them better,” said Ms. Bentley, who is completing high school online so she can work with Mr. Gillette. “Siblings are there to support each other and help them through tough times. When you get to this cancer world you can’t do anything about it.”

Another issue, she found, is that healthy siblings are not necessarily part of the discussion about their sibling’s illness or treatment plan. This affects how the sibling copes with the loss; the less cohesive the family unit, the harder it is to grieve.

Christina G. Hibbert, a clinical psychologist in Flagstaff, Ariz., and author of “This Is How We Grow,” was 18 when her 8-year-old sister died of cancer. When Ms. Hibbert was 32, another sister who was 16 months younger died after overdosing on alcohol and Tylenol. Dr. Hibbert said she is close to her two surviving sisters and one brother.

“It’s really helpful for families and siblings in general to grieve together,” she said. “Even a surrogate parent figure can help with that process to make sure the siblings all have a place to talk about what’s happened and not make it something they’re not supposed to bring up because they don’t want their parents to be sad.”

The good news is that studies have found that people who have experienced illness or loss at a young age show a resilience and emotional maturity that others don’t. A 2013 study of 40 young adults ages 17 to 24 explored the impact of growing up with an ill sibling on the healthy siblings’ late adolescent functioning. The authors found that growing up with an ill sibling gives the healthy sibling an opportunity to develop empathy and compassion well before their same-age peers.

“They recognize the fragility of life, they’ve seen somebody hurt,” said Sasha Fleary, an assistant professor of child study and human development at Tufts University and one of the study’s authors.

Ms. DeVita-Raeburn agrees. “All of my strengths and all of my weaknesses come from the experience of my brother’s illness and death,” she said. “But I still miss him every day.”