Type 1 diabetes (T1) is a family disease because family life changes dramatically when a child is diagnosed with T1. It certainly did when we rushed our nearly six-year-old son Casey to the hospital two-and-a-half years ago in severe diabetic ketoacidosis. I’ve previously described the challenges for both child and parents living with this life-threatening condition. But how do they affect the T1 child’s siblings? Neither researchers nor clinicians have paid siblings much attention.
Consider how the following might affect them: (1) parents’ 24-7 checking and treating blood glucose (BG), (2) parents’ anxiety and sleep deprivation from seemingly uncontrollable factors sending their T1 child’s BG dangerously low or high, and (3) the horror of near-fatal lows and highs, especially when caused by trusted humans and technologies (dosing error by Casey’s endocrinologist; Dexcom Follow App alarms failed to sound when Casey’s BG dropped to near-coma level as we slept).
Casey’s siblings—ages 4 (Sora), 6 (Ashton) and 10 (Jaiden)—have lived this reality for several years. No research, apparently, has included siblings this young. Studies of older siblings generally report mixed effects, from resentment to empathy. Curious, I interviewed each of Casey’s.
Jaiden has no memory of life before T1, despite being almost eight when Casey was diagnosed. He does, however, vividly remember the day of diagnosis.
“At my friend’s house, Casey...didn’t feel well, and he didn’t want to play and we were concerned,” Jaiden said. When Casey was rushed to the ER, “I felt shocked. I was worried and scared.”
Jaiden then described two other T1 emergencies he personally witnessed, the first at camp five months after diagnosis and the other last spring biking in the woods.
“When the doctor [prescribed] Casey the wrong [insulin] dose and he went to around 20 [brutally low BG], and in the woods when he went low and we had nothing to give him and he couldn’t ride his bike. Dad had to carry him on the [handlebars of my] bike….I was scared because his blood sugar was really low. When you’re low, you can die,” he said. Jaiden added that “It’s not fair he lives with [T1] because he doesn’t get to do fun things at certain times or eat something or doesn’t feel well because his blood sugar is bad.”
Ashton also thinks “Diabetes is scary.” It makes him mad because diabetes can make Casey “really sick.” It also means “You have to put [‘really, really sharp’] needles in Casey’s leg or butt…every single day.” He wishes Casey didn’t have diabetes “so he’s not hurt so many times” and “because when he goes low and you want to go to sleep you have to stay up for a long time.”
Sora also described ways T1 is hard on Casey. “It’s a little bit scary to have diabetes because of the needles.” She observes he sometimes moves when inserting them to attach T1 equipment to his body.
“Casey has to be good for diabetes. He’s really strong with the body to do it.” Also that “He wants to play soccer with his friends, but he has to do his diabetes.” Attending to his diabetes can be “a little hard…because everyone wants to ask him questions.” Turning to the impact of T1 on his family, she said “When he goes low... it will wake everyone up. I wish he didn’t have diabetes. It’s hard to sleep with alarms.”
T1 is a family affair for them. Helping Casey is so second nature to Jaiden he had trouble recalling how he does. I reminded Jaiden he recently helped Casey on the school bus. The school nurse told me he refused to leave Casey’s side until he knew his BG was OK.
Jaiden recalled, “He was too low on the bus, and I gave him [glucose] tabs and at school we went straight to the nurse to make sure he was OK.”
Ashton also wants to protect Casey, especially when he’s sick or in the hospital. “I help watch out to give him tabs. Sometimes when you need help with something for Casey, I can get it for you,” Ashton said.
Likewise for Sora. “I help him, and I ask him questions. I bring him tabs and his diabetes bag when he needs it,” she said.
Casey’s siblings are proud of how he manages T1.
“I think he’s brave because he does so many shots and he doesn’t cry,” Jaiden said.
Ashton agreed. “He’s brave. When he’s sick, he won’t cry and when he goes to all the doctors.”
Sora declared he’s strong.
Do Sam and I pay more attention to Casey?
Ashton replied matter-of-factly.
“You and Dad talk to Casey a lot,” he said.
Sora’s answer touched me.
“Casey gets more attention because you have to take care of his diabetes. It’s ok that mommy and daddy pay him more attention for diabetes. It keeps him safe,” she said.
When asked what Sam and I do for Casey, Jaiden replied “Everything.” He generously volunteered, however, that we treat all four children equally. Summing up what a cure for T1 would mean, “We all [wouldn’t] have to worry about Casey all the time,” Jaiden said.
As for the message they would send Casey, all mentioned his strength, wanting him to stay healthy, hoping for a cure, and “lov[ing] Casey a lot!”
What did they think about Casey getting a diabetic alert dog (DAD)? Jaiden is overjoyed.
“It’s amazing to get Elvis so Casey has a friend to help him get through diabetes and…to make sure he’s ok when he’s playing, or at a party, or a restaurant,” Jaiden said.
The depth of Ashton’s answer surprised me.
“Elvis will give him hugs. If Casey is sad, Elvis will make him happy. Elvis could get him tabs. When he might be sleeping, he can tap him with his nose when he’s high or low or he could tell you if he’s low or high. He could help him be safe a lot…Casey will be really happy,” Ashton said.
“It’s good for Casey to get Elvis because dogs are sweet and kind. He’s going to help and love Casey,” Sora said.
Just as they themselves do.
Lisa Seitles and her husband Sam are the owners of READ Preschool and Camp Tuscaloosa. They have four children and are active members of the community.