Seven-year-old Hylie was nervous. You could tell by the way she twirled her blonde braids with her fingers, and pressed her little back against her chair. The family had been invited to share their story on Radiothon, a fundraising event for Johns Hopkins All Children's Hospital, and here they were, "live" on the radio.
Hylie listened as her parents traded big words with the radio host—words like “Moyamoya disease,” and “one-in-a-million diagnosis,” and “vascular surgery.” The microphone loomed larger than life in front of her. Would the radio host be coming to her next?
Instinctively, she turned to 12-year-old brother Braden and grabbed hold of his hand as if her life depended on it. Braden didn’t blink. He held her hand patiently for a few minutes until her nerves calmed, and then gently placed it back on her lap.
Typical brother-sister behavior? Their mother, Stacy, knows that it’s not.
Hylie and Braden
While the family has always known Braden to be protective of Hylie, the unnerving medical journey that her illness has prompted seems to have deepened the siblings’ connection.
“They have this special bond that is very, very interesting, just the way that they care for each other,” Stacy says.
Hylie suffered the first of many strokes in December of 2016, and the next few months were filled with doctors’ appointments and tests in an effort to get to a diagnosis that had remained elusive. In May of 2017, Hylie was diagnosed with Moyamoya, a rare, progressive condition in which the walls of the carotid arteries are slowly closing off. A major surgery performed in June has made a difference for her, but the family is learning to live with a measure of uncertainty.
“I really don’t know how to explain it,” says brother Braden. “It’s not so much scary, as you just don’t really know what’s happening.”
“Whenever she comes out of anesthesia, the first person she wants is her brother,” Stacy says.
During the longest hospital stay, when Hylie’s face was severely swollen and she didn’t look like herself, Braden was right there.
He would wrap his arm around Hylie and she’d snuggle into his chest. They would order Oreo milkshakes and watch movies. He’d put on dance recitals with the stuffed hippos she has had since she was a baby. With not much stuffing left in them, the dances were billed as “The No Neck Hippo Shows.”
“He’s funny. He says crazy things. He makes me laugh,” Hylie says.
Johns Hopkins All Children’s clinical psychologist Melissa Faith, Ph.D., ABPP, studies sibling relationships and how brothers and sisters adjust to illness. Faith says while this deepening of bonds is not the norm, it does happen.
“Often, it’s a magnification of what was already there. If there are strong relationships to begin with, those traits can get amplified after a diagnosis.”
Joao and Liam
Another parent, Judy, mother of 9-year-old Joao (pronounced jo-WAH) and 6-year-old Liam, has seen this happen with her boys. While she opines the boys are fully capable of fighting like cats and dogs, as even the closest siblings can, she has seen them grow closer.
Joao as sickle cell disease and, in late 2016, he needed a bone marrow transplant. When family members were tested as potential donors, Judy tried to keep it simple for her youngest son, Liam.
“I said, ’They’re going to poke you to test for something, OK?’ Liam asked me, ‘Is this to help Joao?’ I said, ‘Yes, it is.’ He said, ‘OK then, I’m fine with it.’ "
Liam turned out to be a 100 percent match, and was the donor for his brother’s bone marrow transplant. Now, six months later, the boys play together more. Liam makes sure his brother takes his medicine. Joao makes sure Liam never gets bullied. The boys share a room with bunk beds, but invariably, they wind up together sharing one of them. It has become a source of humor around their home.
“I tell them, ‘You’re getting too long for this. You’re going to push the other out of the bed!” Judy says, laughing. “No, we’re not,” they insist.
Mental health experts caution that studies show that most often, bonds don’t automatically deepen between siblings when one is experiencing a long illness. Quite often, it’s the opposite.
“Childhood chronic illness puts a lot of pressure on the family, kind of like a boiling pot. While some siblings can come out of that boiling pot with increased empathy and a better ability to comfort others, what is more typical is that many healthy siblings feel excluded and alienated. They may withdraw from the family and even their peers,” Faith explains.
Faith says it’s important for parents to understand this is a completely valid reaction, and children shouldn’t be made to feel guilty, or pushed into a more nurturing role with their sibling.
Siblings’ ability to cope starts with how well the parents are coping. Faith says parents can model this for their children. Giving the healthy child some protected time where they are the sole focus of attention, even a few times a week, can be powerful. Allowing the sibling to ask questions about the illness and to get as much medical information as is developmentally appropriate is also important.
The hospital’s child life specialists, mental health professionals, and social workers all play a role in helping families navigate their way through treatment in a way in which relationships are nurtured and supported.
Perhaps there will always be an element of mystery as to why some siblings can be put through the emotional crucible of a protracted illness and come out stronger, while others may struggle.
The very young may have the benefit of clarity in a way their parents don’t. When asked why he’s so gentle and supportive of Hylie, brother Braden puts it simply.
“I do it because she’s my sister.”
It’s no surprise then that when the radio host finally did call upon Hylie as she sat in front of that enormous microphone during Radiothon, the question about her brother was the easiest one.
“Hylie, he’s a good big brother, isn’t he?”
She leaned in. “Yes, he is!” she said.
We believe her.