DGS

The three letters that are the title of this post have terrified me since Sunday evening. But before I talk about that, I want to talk about something that every parent already knows.

Parents worry about their children. We worry that our kids get enough to eat. We worry that our kids are healthy. We worry that our kids are safe from everything bad in the world. As a relatively new parent, I can tell you that I never knew just how scary the world was until the moment I became a parent. But all of these are things I can protect my children from.

DGS stands for DiGeorge Syndrome. It is a type of Velo-Cardio-Facial Syndrome (VCFS). It is a genetic disorder classified by a deletion mutation of genetic material on the 22nd chromosome. Approximately 5% of cases of DGS are inhereited, the other 95% are spontaneous. DGS is associated with a long list of symptoms that include interrupted aortic arch (the heart condition Ema has), immune system deficiency, cleft palate and/or lip, developmental delays and disabilities, certain facial characteristics like wide-set eyes and low-set ears, and a few others. Not every person with DGS will have every symptom. The severity of these symptoms varies from person to person as well.

This is what we could not protect Ema from. On Friday, we found out that Ema tested positive for DiGeorge Syndrome. We are hopeful that hers is a mild case, but ultimately it doesn't matter. I got to hold Ema Friday night at around 11pm. It was the first time I had held her since last Saturday. Ema is perfect. That's all we need to know for right now.