Although Miranda Haynes 23, of Toledo, Ohio, doesn’t have Type 1 diabetes, the condition shaped her childhood. When she was 6, her father, then 42, was diagnosed. As the devoted daughter of a man with hard-to-control diabetes with extreme blood-sugar highs and lows, “I had to grow up fast,” she says.
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Her father repeatedly experienced severe reactions from low blood sugar, or hypoglycemia, which left him unconscious. After giving him glucose tablets, Haynes recalls, “I would wait for him to come back and just pray that he did.”
With Type 1 diabetes, the body produces little or no insulin, a hormone that’s vital for breaking down sugar, or glucose, from the food people consume. Without enough insulin, a person’s blood glucose levels will skyrocket. Possible long-term complications of Type 1 diabetes include nerve damage, vision loss, and kidney and heart disease.
Until fairly recently, taking self-injections of insulin throughout the day was the only method for controlling blood sugar. Unfortunately, with insulin, episodes of hypoglycemia can result as the body reacts too strongly to the insulin dose alone, or in combination with other factors like intense exercise, causing blood sugar to plunge. Hypoglycemia, if untreated, can lead to unconsciousness and seizures, and contribute to motor vehicle and other accidents.
Haynes’ father was not doing well with his condition. He had difficulty sticking with his treatment regimen or following his low-carb diabetes diet. “He loved ice cream,” she says. “He loved everything he shouldn’t have.”
With her much-older siblings immersed in high school and college life, Haynes and her mother took care of her father and supported each other. But the stress of watching him get progressively worse made his daughter sick with worry.
Early in elementary school, Haynes says, her weight dropped dangerously low and she developed stomach ulcers. She recovered slowly and had to be home-schooled for the next few years.
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Type 1 diabetes runs in families, but impressionable kids don’t have to develop the condition to feel its impact. Fortunately, today, with continually evolving treatments and greater openness and awareness, families learn to take Type 1 diabetes in stride.
“Children can certainly be emotionally affected by a parent with Type 1 diabetes,” says Mark Heyman, a diabetes psychologist at the Center for Diabetes and Mental Health in Solana Beach, California. “The impact on a child really depends on how their parent is dealing with Type 1.”
Communicating and letting children know what to expect helps buffer against uncertainty and fear. “For children, when they see a parent is having a low blood sugar, they can feel very scared but also out of control because they don’t know what’s going on,” Heyman says.
Preparing children with clear instructions for what to do in an emergency eases stress. “Just laying out a very specific plan on how to help can be empowering for the child,” Heyman says. “It can make them feel like they have a little bit more control of the situation and also make them feel safer.”
Honesty is the best approach, Heyman says. That includes sharing facts and statistics at an age-appropriate level. It means explaining that it’s somewhat more likely for a child whose parent has Type 1 diabetes to develop the condition, but presenting it in such a way that kids don’t become fearful. Parents’ positive attitudes help kids put Type 1 diabetes into perspective.
Dennis Jackson remembers his mother’s glass syringe, back in the day before disposables. His mother, now 81, has been dealing with Type 1 diabetes for nearly 70 years. “She’s doing fine,” says Jackson, the senior director of finance for an aerospace company in Northern Virginia.
But when Jackson was growing up, his mother’s low blood sugar reactions were distressing. The family had to immediately treat her with a medication called glucagon, which causes blood sugar to rise (the opposite effect of insulin). “Sometimes we had to get the glucagon and give her a shot through her nightgown or whatever, just to bring her around,” he says.
Because their father, who was in the Navy, was often away at sea, it fell to Jackson and his siblings to watch out for their mother, make sure emergency supplies were always at hand and keep her safe during diabetic seizures. At night, one of the children always slept in their mother’s room to make sure she was OK.
That was more than a generation ago. Jackson has seen the evolution of diabetes management and technology firsthand. His daughter, now a young adult, was diagnosed with Type 1 diabetes as an infant.
To get her on the right track, her parents took her to Johns Hopkins Hospital in Baltimore, where she was seen by an endocrinologist, a registered dietitian and a pump specialist, among others. “Having a good medical team is important,” Jackson says. Today, his daughter manages her diabetes well with an insulin pump, a continuous glucose monitor and a healthy exercise plan.
In Jackson’s family, diabetes skipped a generation, but that’s not always the case. When both a parent and child have Type 1 diabetes, a feeling of kinship may develop, says Kara Harrington, a staff psychologist and research associate with Joslin Diabetes Center in Boston. That can be helpful in combating the isolation that can accompany the diagnosis, she says.
However, family relationships can run the gamut, Harrington notes. “At Joslin, we don’t look just at the child but at the entire family,” she says. Issues among parents, like guilt — or blame — for passing on diabetes need to be expressed and worked through to prevent everyday management from being affected, she says.
Whether or not a parent also has diabetes, the family’s reaction is key. “The child looks to the parents when they’re diagnosed: ‘How scary is this? How serious is this? What should I make of this?'” Harrington says. Each family member needs a place to feel sad and upset, she says, while being able to strike a balance. This is what kids need to hear, she says: “We’ve got this. This is not going to break us — we’re going to be fine. You’re going to be fine. We’re going to do everything that we want to do.”
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Unfortunately the story was different for Haynes’ father. Injuries from slipping on a patch of ice compounded his health problems. The back surgery he endured was not a success, and he remained in pain from then on. “He totally gave up over time,” she says. Her father died in 2014.
Haynes has moved on with her life. She completed her studies and now works for Chrysler in Toledo, a job she enjoys. Last October, she got married. Her husband has Type 1 diabetes.
Haynes is determined to help her husband help himself. She encouraged him to go on an insulin pump, and he uses another device to graph his glucose levels and alert him to highs and lows. “I no longer have to worry about him, to a degree,” she says, “But it’s always there.”
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Growing Up With a Parent Who Has Type 1 Diabetes originally appeared on usnews.com
