May she never know Wilford Brimley

Evelyn has a genetic marker that makes her significantly more likely to develop Type 1 Diabetes, the childhood-onset, insulin-dependent kind of diabetes. It does not make her likely to develop the disease, just more likely than if she didn't have the marker. She has a 3 in 100 chance, vs. a 1 in 300 chance in the general population. A 3 percent chance is very small. Nevertheless, it makes me sad/nervous/worried/upset/guilty. We found out that she has the marker because the hospital where she was born is involved in a multi-national study, sponsored by the NIH, to determine what, if any, environmental factors make a child develop type 1 diabetes. What makes Baby X with the marker develop the disease, when Baby Y with the same marker does not? They asked our permission to test her cord blood and we agreed. The researchers called us about a week ago with the results.

It is a very important study, and they have asked us to include Evelyn, but the amount of work involved is just too much. Evie would have to have a clinic visit with a blood draw every three months until she is 4 years old, and then every 6 months until she is 15. We would have to keep track of when she eats new foods, when she gets sick, when she gets vaccinated. There are stool samples involved. While the work on the parent's end is a lot, I am more worried about Evelyn. Getting pricked all the time, maybe feeling like there is something wrong with her because she goes to a clinic so often--I don't want that for her. Instead we'll probably tell our pediatrician about the findings and then read up on the symptoms of diabetes so we can watch out as she gets older. Sadly there is no way to prevent getting the disease. Unlike Type 2 diabetes, it's not like a low-sugar diet or lots of exercise can make any difference in developing the disease.

I know one person with insulin-dependent diabetes and he has had some serious problems. I don't think he controls his sugar levels very well, though, so I'm not sure he is the best person to look to for a guide. We can't do anything but watch for symptoms anyway, so I really shouldn't worry. Three percent is a very low chance...