At Camp John Marc in Meridian, Texas, a boy about 6 years old gave up his place in a long line waiting for hamburgers.
He made his way to the end of the line, where a teenage girl who uses a wheelchair was also waiting to grab dinner.
“My sister uses a wheelchair,” he said. “Can I help you?”
Although the two had never met before, the boy knew the girl might need help because his sibling sometimes does.
“He knew to have that kindness and empathy towards her,” said Kat Davitt, co-director of the Sib2Sib Program.
Brothers and sisters of children who have illnesses or injuries are sometimes referred to by people in this field as “the shadow children” because they can feel unseen.
Focused efforts at Cook Children’s Health Care System aim to support them.
Unique challenges
Siblings of patients may feel lonely, left out or that they do not get as much attention because parents are focused on their other child.
They may also face “adultification” from grappling with heavy life events at a young age, said Abigail Hoekstra, who is also a co-director of Sib2Sib, a program under the umbrella of sibling support at Cook Children’s.
In one conversation Hoekstra had with a young woman who was nearing adulthood, the teenager said she was not planning to apply to college.
“I said, ‘What do you mean?’” Hoekstra recalled. “And she said, ‘Well, who’s going to be there to take care of my brother when my parents die?’”
Sadness, fear and grief are also not uncommon. Siblings may also feel guilty, as if the patient’s illness or injury is their fault.
They may also feel survivor’s guilt.
“I worked on a brain injury rehab center, and I would have a lot of older siblings say, ‘You know what? It should have happened to me because I could handle it better,’” Davitt said.
A space of their own
Opened in 2023, the Panda Cares Center of Hope Sibling Support Center is a place where kids ages 3 to 11 hang out while their parents and the young patients are at appointments or in the hospital.
Parents can focus on their sick or injured child. Meanwhile, siblings can connect with peers and participate in activities that help them process their experiences, said Katie Campbell, director of family support services for Cook Children’s.
It fosters a sense of belonging for siblings — and pride, too.
“The sense of pride that the brothers and sisters feel (is), ‘This space is for me.’ The rest of the hospital is about you, but this sibling center, it is about me’,” Campbell said.
Cook Children’s also operates or collaborates to host camps for patients and their siblings, giving them a typical summer camp experience.
Camp Courage, for example, offers a sleepaway camp for teenagers and day camp for school-aged kids — both exclusively for siblings of patients. The camp’s goals are for siblings to process their unique experiences and connect with others on similar journeys.
“A lot of times … it’ll be the first time they’ve ever met another sibling with a brother or sister with chronic illness or life-changing injury, so, pretty powerful for them,” Davitt said.
At gatherings called playshops, siblings connect and process experiences over activities such as games and art.
Cook Children’s also organizes about four field trips per year for teenage siblings.
Supporting siblings through medical events
Medical teams, including child life specialists, work to include siblings of patients they provide care.
The child life specialists work alongside parents, letting them know what support they can offer and then letting the parents tell them what they need. Child life specialists might talk siblings through a new diagnosis or explain a patient’s new medical equipment in an age-appropriate way.
“The posture is really to be empowering to the parents and help them navigate some really unthinkable and difficult situations,” Campbell said.
Sometimes, their work includes supporting siblings and their families at the end of a patient’s life.
Child life specialists can help siblings create “legacy items” with the patient that they can keep and remember them by. This may include handprints or collaborative artwork.
“We have child life specialists that are there and present when brothers and sisters come to say goodbye or at the time of death, and so really that focus on developmentally, what does this brother and sister need to make sense of this hospital experience, even if it means something super hard, like the brother or sister not going to survive,” Campbell said.
Lasting resilience
Despite the challenges, siblings of patients often take something positive from their experience, Davitt noted.
Many choose to go into healthcare professions. They may also be skilled problem solvers and have good social skills with peers because they tend to spend more time with friends than other children.
And, like the boy who stepped up to help a teenage girl at camp get her dinner, they may have a very high degree of empathy and be more understanding of others.
“We see some amazing behaviors in siblings,” Davitt said.
McKinnon Rice is the health reporter for the Fort Worth Report. Her position is supported by a grant from Texas Health Resources. Contact her at mckinnon.rice@fortworthreport.org.
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