‘My daughter has type 1 diabetes. Here’s why I got her sister screened’

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After Covid swept through Amanda Berg’s household in January 2022, she began to notice that her 2-year old daughter, Haddie, wasn’t recovering like the rest of the family. Amanda, her husband, and their 4-month-old, Summer, were slowly improving, but Haddie’s condition was deteriorating. She had low energy, constant hunger, excessive water consumption, and soaked through her nighttime diapers. Despite being a former NICU nurse, the possibility of type 1 diabetes (T1D) was nowhere on Amanda’s radar. It wasn’t until one morning when Haddie could not even get out of bed that the fruity-sweet smell of her breath triggered Amanda’s memory of something she had read in a textbook about the telltale signs of diabetic ketoacidosis (DKA), a potentially life-threatening condition. It was then that Amanda rushed Haddie to the ER, advocating that she be tested, and consequently diagnosed and treated, for diabetes.

The initial six months post-diagnosis were incredibly challenging. Even with a background in nursing, Amanda felt confused and overwhelmed. She eventually broke her 11-year hiatus from social media in search of an online community that proved invaluable for support and education. Today, Amanda serves as the Director of Parent Support at Type One Together, one of the largest online communities to serve T1D kids and their super parents. She also co-hosts The 108 Podcast which delves into the real-life management of diabetes and the profound impact it has on entire families.

Type 1 diabetes is often called the “invisible disease.” T1D autoantibodies can linger undetected for years, but despite the fact that one of the most significant factors for type 1 diabetes is a family history, neither Amanda nor her younger daughter, Summer, had been screened. Early screening is simple and it has the potential to reduce DKA at onset by more than 50%^1,2. Amanda eagerly agreed to share her experience of getting Summer screened, recognizing that her story might help other families avoid the challenges her own went through. 

The at-home screening process couldn’t be simpler

There are three ways to get tested for type 1 diabetes autoantibodies—two of which can happen right in the comfort of your home (the other is at a doctor’s office or lab). If you have a relative with T1D, you’re likely eligible for a free test kit from TrialNet, a research-based screening and clinical trial program. 

In Amanda’s situation, she and her youngest daughter were both eligible for the free test kit, so this was the option she chose, and the process could not have been easier.

Here’s how it went down, from Amanda’s POV:

1. Order the test kit online

“Once I found out that I could test from home, I went online and filled out questionnaires for each person I needed a kit for. The questions were pretty straightforward, like asking for basic demographic information and included questions such as ‘who in your family has type 1 diabetes?’ Once the test request was submitted, it came via FedEx Express Shipping and was on our doorstep in two days. I was actually surprised at how quickly the kits came in the mail, especially when thinking about how long it might’ve taken to get appointments with both my doctor and my daughter’s pediatrician.”

2. Prepare and test

“The process itself was remarkably simple. Clearly written instructions were provided, and I could even opt to scan a QR code for a video tutorial if I wanted extra guidance before getting started. One of the bigger challenges, understandably, was mentally preparing my toddler for a finger prick to draw blood. However, I found a simple remedy in the form of gummy bears, which worked wonders in keeping my daughter at ease. Once the gummy bears made their appearance, the entire testing process for Summer was completed in under a minute.

It’s worth noting that this test requires a slightly larger blood sample than the standard finger prick, filling a small test tube to at least halfway. Nonetheless, Summer handled it like a pro—not a single squirm or tear shed. I should also mention that I have a background in nursing and experience in managing my older daughter’s blood sugar checks, which likely made me more comfortable with the procedure. I’ll also say that if you’re testing yourself, I highly recommend enlisting the help of a friend or another adult, as procuring a sample independently was also a bit challenging.”

3. Send the test back and wait

“After we collected the blood samples, we carefully packaged them up in the provided pre-paid envelope. While we had the option to schedule a home pickup, we opted for the convenience of dropping them off at our nearby FedEx location, just around the corner from our home. Now, all that’s left for us to do is wait for the results, which are expected in 4 to 6 weeks and will be emailed or delivered via phone call.

The waiting game is a mixed bag of emotions. If our family had a long history of type 1 diabetes, I might be more anxious, given the increased likelihood of one of us having a type 1 diabetes autoantibody. However, since our family lacks such a history and we can identify environmental factors contributing to Haddie’s diagnosis, I’m just more curious than anything—the peace of mind is invaluable. Despite the uncertainty, I’m confident that we are well-equipped to handle whatever those results may be.”

What happens once the results come in

If the results come back negative for T1D autoantibodies, Amanda will have peace of mind knowing that she knows, with certainty, that Summer does not have a genetic predisposition for the autoimmune condition. In this case, she will continue to be vigilant and aware of the environmental risk factors, and signs and symptoms, that could indicate an onset of type 1 diabetes in the future.  

If, in 4 to 6 weeks, the results come back and reveal that either Amanda or Summer have one or more type 1 diabetes autoantibodies, they may qualify for a clinical trial and/or ongoing monitoring. They would also be able to schedule an appointment with their healthcare providers to discuss next steps, which could include additional monitoring or even innovative treatment options to slow the progression of the condition, depending on how many autoantibodies are found. 

A note from Motherly on early screening for T1D

When it comes to early screening, there is nothing to lose and everything to gain. It allows for a chance to prepare and to come to a place of acceptance before a formal diagnosis even occurs. Given that symptoms are often absent when only one T1D autoantibody is found, early identification of markers like this provides the time to gather information, connect with supportive online communities, and mentally prepare for what the future will inevitably hold—which, even with a T1D diagnosis, can remain vibrant, fun and filled with love, health and happiness.