Should Parents of Children with Type 1 Diabetes Celebrate Their HbA1c Scores?

Yesterday my six year old son with Type 1 diabetes, Sacha, was at the Children’s Hospital in St. Paul, Minnesota, for his quarterly checkup. My wife went with him, and sent me a text from the road: “His HbA1c is xx!” It was a great number.  

HbA1c is the figure people with diabetes use to track how well they are doing. It provides a three-month average of blood glucose control and should, ideally, be under 7.0. It rarely is, of course, but the more people with diabetes keep their HbA1c figures in the zone, the less likely they are to suffer medical complications later on.  

I was thrilled with Sacha’s excellent score, since the whole family works so hard at controlling his blood glucose.

It starts with Sacha himself, who never eats without telling us, and who always waits patiently for a blood glucose test and insulin dose before the meal begins; it continues with his rapidly maturing 10-year old sister, Tessa, who has learned not to try and sneak him food, and who doesn’t fuss much when we impose limits on them both; it continues with our wonderful 21-year old caregiver, Katie, who helped out all summer, carefully checking Sacha’s sugars under all kinds of conditions; and it ends with my wife Emma and myself, who make sure the whole system runs smoothly, buy the diabetes supplies, do the insulin pump and Continuous Glucose Monitor insertions, and check Sacha’s blood sugars twice a night, every night, at 11:30 pm and 2:30 am, and often more. All those sleepless nights of reducing blood sugars with insulin or, conversely, raising his sugars with juice, Glucerna, or other late-night snacks. 

There is something awful about talking publicly about a good HbA1c, however. So many parents, siblings, and kids pour their hearts and souls into controlling blood glucose, but still don’t get good HbA1c results, for whatever reason. Bodies vary at different times of life and the year, and can easily defeat the best of all-family efforts. Love, attention, and watchfulness are no guarantee of success. When Sacha was first diagnosed over four years ago, we struggled to keep things under control, and had more than a few high HbA1c scores too.    

In even more cases, parents don’t have the wonderful diabetes management resources we do, such as an expensive insulin pump and Continuous Glucose Monitor, rapid acting insulin, and the resources to afford summer help so that we can do other things during the day.

This resource problem is a big one even in developed countries like Canada and the US, where there is still so much poverty and, in the US, lack of basic health care. It is an even bigger one in countries with much less wealth and physical or medical infrastructure.

I’m working now with a team of researchers studying the HbA1c results of kids with Type 1 diabetes from low-resource families in central India, and we’ve found that their numbers are often quite poor. They receive charitable help from wonderful doctors and donors in India, but they labor under extraordinarily difficult conditions. They often have no money for blood glucose tests, no refrigeration for their insulin, and no ability to speak with their medical providers on a regular basis. High-tech insulin pumps and Continuous Glucose Monitors are out of the question.

Unfortunately, many of these kids are likely to develop severe, diabetes-related complications when they get older, even though they are the lucky ones enrolled in a charitable program. After all, kids from low-resource families in the developing word often die shortly after developing Type 1 diabetes, typically without ever being diagnosed. 

HbA1c is thus a marker of achievement, but also one of luck and privilege. Sacha was horribly unlucky to get the disease at the age of two, but was incredibly fortunate to be born in Canada, and to be now living in the US. He was even luckier to have been born into a family with health insurance and sufficient income to hire help.

Parents like us probably should celebrate the family’s achievements; we all worked really hard, together, to get Sacha’s HbA1c into the zone. We should also keep trying to remember, however, and to regularly discuss with our kids, how much our “success” was due to sheer luck and raw privilege.   

And we must also keep this in mind; to reduce the probability of developing complications, Sacha must keep getting decent HbA1c numbers every three months, every year, for the rest of his life. It’s comparatively easy now, while he’s still young, under our care, and watched constantly – even while he sleeps – by those who love him most. 

Once he starts living on his own, preparing his own meals, and handling his own insulin doses and blood glucose tests, it’s another game entirely. 

James Ron

James Ron is an American, Israeli, and Canadian academic, whose son, Sacha, was diagnosed with type 1 diabetes in 2009 at the age of two. Until then, James had never heard of the disease. Today, James is a member of the scientific and advisory group of Life for a Child, an Australia-based charity that supplies insulin and other diabetes supplies to children and youth in the developing world. James teaches international affairs and human rights at the University of Minnesota, and lives in Minneapolis with his wife, Emma, and their two children, Tessa and Sacha.

James Ron

James Ron is an American, Israeli, and Canadian academic, whose son, Sacha, was diagnosed with type 1 diabetes in 2009 at the age of two. Until then, James had never heard of the disease. Today, James is a member of the scientific and advisory group of Life for a Child, an Australia-based charity that supplies insulin and other diabetes supplies to children and youth in the developing world. James teaches international affairs and human rights at the University of Minnesota, and lives in Minneapolis with his wife, Emma, and their two children, Tessa and Sacha.