In September, Lori Bae’s three-year-old daughter Kenzie woke up complaining of a stomach ache. Instead of improving over the next few days, her conditioned worsened, and Lori took Kenzie to the pediatrician, who sent them to the hospital for further testing.
“She was so severely dehydrated that her veins collapsed, which made it terribly difficult for the medical staff to insert an IV. We had two nurses, two IV teams and two anesthesiologists trying with ultrasound machines, lights and warm packs to set a line. Finally, the anesthesiologist put her under to insert a line.”
Kenzie was diagnosed with type 1 diabetes (T1D), and Lori and her husband made the difficult decision to have their other children tested. Kenzie’s 12-year-old sister and 10-year-old brother were screened for T1D at T1 Connect Family Camp in Washington. Lori says the decision to screen her other children was scary but necessary.
“Once we received Kenzie’s diagnosis, I saw a future of needles, monitoring, discipline, diligence, no spontaneity, restrictions, and I didn’t like it. Do I really want to know my other two children’s future? NO! And screening is like knowing. But we did it. We did it not because we are afraid of the results, we did it because if it can help one more kid, one more person with T1D, then we have to do it.”
Screening for T1D has only been available in the last decade and is offered through TrialNet, an organization that was established in response to the Surgeon General’s Report Healthy People 2000. This report identified diabetes as a national health objective, and in response, Congress created the Diabetes Research Working Group to develop a plan of action for diabetes research. One of their recommendations was to conduct additional research studies toward preventing T1D. Since that time, more than 160,000 relatives of people with T1D have participated in TrialNet research.
TrialNet offers free screening to people who are between one and 45 years old and have a parent, child, brother or sister with T1D or people who are one to 20 years old and have a niece, nephew, aunt, uncle, grandparent, half-brother, half-sister or cousin with T1D. A small sample of blood is required and can be collected at a TrialNet site or a local lab. Screening kits are also available by mail.
TrialNet’s Pathway to Prevention screening looks for five diabetes-related autoantibodies that signal an increased risk of T1D. JDRF, American Diabetes Association and Endocrine Society now classify having two or more of these autoantibodies as early stage T1D. Finding T1D in its earliest stage allows for close monitoring to avoid adverse events, like those surrounding Kenzie’s diagnosis.
Heather Maurer (pictured right with son Tyler) says it was never a consideration not to screen her son. She’s lived with T1D since she was two years old and was concerned about passing the risk on to her children.
“Once we decided to get pregnant, I knew I would have my child screened. He’s been screened twice (once at one year old, and again at two years old), and both times have been negative.” Heather says she will continue to screen her son until he is 18 years old.
TrialNet experts recommend annual monitoring until the participant is 18 years old, and state that, “If the participant is under age 18 and tests positive for one autoantibody, his/her risk of developing T1D is low at this time. But, because chances of developing T1D are highest during childhood and autoantibodies develop faster in growing children, we recommend yearly rescreening until age 18. If your child has two or more autoantibodies, the likelihood of developing T1D nears 100 percent.”
It usually takes about four to six weeks to get results, and at the time of this story, the Baes were still waiting for the results. Lori is not sure she’ll retest her children if the results are negative. “However, I may allow them to make that choice. Giving them this choice may open the door for each of them to wrestle with this disease and the impact it has on them and our family. I want them to process this and I’d like to be there with them as they do.”