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

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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. 

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Need A Nap2Sharad PendseySimon CarterValerieScott Strumello Recent comment authors
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Need A Nap2
Need A Nap2

I think sometimes it is good to publish numbers.  I didn’t know anyone was getting 5s until I looked at a low carb blog that had some posts about it.  I know my daughter isn’t getting that low but it gives me hope that others are scoring that low.  The usual chart starts at 7 and goes up really high to 11 or 12.  But it is possible and I know others who realistically score between 6 and 7.  As you mentioned, the problem is comparing.

Sharad Pendsey

Sharad Pendsey, Dream trust , Nagpur, India

 Dear Jim,
It is a fantastic idea.  As a parent of Type 1  it’s always a challenging job.  More and more parents should strive for ideal HbA1c for their children  and motivate each other to achieve it. Although I am not a parent of Type 1 diabetic, But I am a foster parent and I am handling hundreds of them. I am always  worried that majority  cannot even estimate HbAic

Simon Carter

Hi James,

Would love to work with you to help Type 1s in India, and also help with the stress of overnight BGLs. Please contact me or see my web.

Valerie
Valerie

James is sure right in his last sentence that the game will change when his child is older. I think well before college-more likely in high school. I am the mother of a diabetic who let me “drive the bus” when she was a child but took over driving in middle school and apparently didn’t drive as well as me.  Perhaps some newly adult diabetics can give parents of young diabetics good advice on how to make than transition smoother.

Scott Strumello

I concur with Karmel’s thoughts; I think public disclosure of HbA1c’s is something that the diabetes community needs to avoid.  I, for example, have what I think could be considered “great” numbers, but I have steadfastly avoided public disclosure (for example, TuDiabetes has a profile parameter for HbA1c which I have always left completely blank).  The number may be something we can use as a barometer, but I don’t believe comparisons with anyone else are appropriate, and what’s more, I think that the notion of a “good” number comes with a feeling of failure for not having achieved that, which… Read more »

Karmel Allison

When I read the opening, I thought this was going to be about not celebrating A1cs too much because the other side of the coin is that a bad A1c is a failure/shame, and that is an unfair emotional burden on a child. I was pleasantly surprised to find I was wrong; whichever side of the emotional burden argument a person is on, the points you bring up here are important and not ones I had considered. Thank you. And thank you also for the notion of an A1c as a family endeavor; I think that is both honest and… Read more »

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