Dear Annie:
My husband and I have a large family, and earlier this year we welcomed our newest baby, “Izzy.” The pregnancy went smoothly, and everyone thought she was healthy until about half a week after coming home, when she began showing concerning symptoms. We’ve been working closely with her doctor ever since and recently learned she has a rare genetic condition. It’s incurable, causes severe symptoms, and is usually fatal in childhood.
We’re OK sharing information about her condition with concerned family and friends in our children’s school group. However, I’m not sure how to respond when strangers in public notice something is clearly off. I want to respect Izzy’s medical privacy, but I also don’t want to arouse suspicion that we’re hiding something.
The first time a stranger pointed out how “floppy” Izzy was, I tried to brush it off while acknowledging it was true. We now believe that this same person reported us to child protective services on the suspicion that our home was somehow medically unfit for our children to live in. This is an assumption and there was no real basis for them to think this if it’s true; child protective services never obtained a warrant to actually come search our home or ask us questions. Although nothing came of it, we want to avoid that happening again in the future.
The next time someone in public asked, “Is your baby OK?” I just said she was fine and moved on. Then I felt bad because I don’t want to lie, and it’s obvious something is wrong. I’m wondering if I should come up with a bare-minimum response to avoid the busybodies and others, like child protective services, getting involved when we’re already overwhelmed dealing with this as a family. What are your thoughts?
— Medical Mama
Dear Medical Mama:
The stress you and Izzy are carrying doesn’t fall under the small talk umbrella. You don’t owe strangers private details about your life or your family—period.
The next time it comes up, have something short and simple in your back pocket that respects Izzy’s privacy but shuts down more questions. Something like, “She has a rare condition, but she’s doing well. She’s getting excellent medical care and is so loved.”
You can’t control what others think or say, but you can control how much of your energy you give them. Save it for Izzy and the rest of your family. That’s where it belongs.
Dear Annie: I’m having a hard time balancing my baby’s medical privacy and public curiosity
