We’re Betty’s parents. She arrived early, and her first days have included NICU care, help with feeding, and blue-light treatment for jaundice. Then her newborn screening raised a concern for congenital adrenal hyperplasia, or CAH. We began learning a whole new set of words.

At the time of this first post, Betty is being evaluated and treated for suspected CAH. We’re still gathering the results that will help her specialists explain her diagnosis. We’ll update her story as we learn more, with a clear distinction between what her team has confirmed and what we’re still asking.

Our questions have been practical: What does this test actually measure? Why does she need this medicine? How will the team know whether the amount is right? What do we need to learn before we bring her home? We’ve wanted to understand each answer well enough to explain it to each other.

That is why we started CAHblog. We want a place for the questions that come after the appointment, the everyday experience of caring for a child, and the reassurance of meeting someone who has been there. Families living with classic or nonclassic CAH are welcome here, as are families still waiting for answers.

We’ll share selected parts of Betty’s story while leaving room for her to decide what she wants to share as she grows. Her medical details are only one part of her life. We hope this journal will have plenty of ordinary family moments, too.

If you’re new here, you can start small. Introduce yourself, tell us what brought you here, or share something you wish you had known in your first week. You don’t need a polished story. We’re glad to meet you.