Screening for Type 1 Diabetes: What’s a Mom To Do?

I recently visited my endocrinologist for a routine checkup. I was in the waiting area reading, texting, and, well, waiting. A woman who works at the office – she helps coordinate research – sat down next to me and introduced herself. She asked if I’d heard about diabetes screening. She handed me a brochure that read, “Can Type 1 Diabetes Be Prevented?”

I thought, Apparently not. I’m in a diabetes center.

Under the title was a picture of an idyllic-looking family. Mom, Dad, Son, and Daughter. Smiling like they didn’t have a care in the world. It wasn’t clear to me who had diabetes, who knew they were genetically-at-risk for diabetes, and who didn’t have diabetes in their cards at all. It didn’t matter. They were content. The only thing missing from the picture was a genetically-at-risk golden retriever.

The woman went on to ask me if I had any siblings.

I told her Yes.

She asked if they’d be interested in screening for type 1 diabetes.

I told her that I doubted it. One’s over 30 and the other is close. And we come from a long line of worriers. 

Then she asked if I had any children.

I nodded my head. I knew where she was headed.

She said that my daughter could get screened for type 1 diabetes when she turns three.  She asked what I thought about that.

What I thought was this:  screening Maya would be a great thing to do if I wanted to stop sleeping at night.

But I didn’t want to be rude. I thanked the woman for the information and told her I’d consider it.

My emotional decision was No, thank you. But when I got home, I thought about it on a rational level. And I understand why people screen their loved ones.

First:  it helps advance science.

Second:  there’s no concrete way to prevent type 1 diabetes now, but maybe there will be a way in the future. If you’re in a database of at-risk patients, you’d be the first to find out.

Last: in the very best case, the person tests out of diabetes. No genetic risk. Everyone jumps for joy.

But.

Of course remains the dreaded possibility; the one where the test says that your most precious cargo might get diabetes.   

I suppose if you’ve got a good head on your shoulders, you could just put the information in your pocket and carry on.

But if you’re anything like me, the knowledge that your child MIGHT get type 1 diabetes would be terribly debilitating.  

Once you have the information, then what?

Do you wait around for diabetes to strike?

Does every “Mommy, I want another drink of water?” give you heart palpitations?

If prevention – not just talk of prevention – but actual prevention was a reality, my perspective would be different. But right now, it just seems like an easy way to cause unnecessary stress.

I took a psychology class in college and I remember learning about self-fulfilling prophecies. If I think that something is likely to happen, it will happen. Maybe it’s silly, but I believe in that sort of thing.  

Right now, I have no reason to believe that Maya is likely to get diabetes. So why give myself a reason?

In the meantime, I respect everyone’s decision to test or not test their children. And I’d love to hear from you. If you could find out the odds, would you?

Jennifer Jacobs

Jennifer Jacobs grew up in Long Island, New York. She was diagnosed with type 1 diabetes at age twelve. The challenges of living with diabetes have inspired Jen to be creative. She makes “diabetes art,” which can be viewed on her website, www.diabetesart.com. Work from Jen’s Diabetes Revealed series has been exhibited at various events in the NY-metro area. She also writes about diabetes and is putting together an essay collection.

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