Anabella, I would love to know what you learned while you were at the study. Justin is not old enough to be a subject.

I was surprised by how little my very seasoned and well-respected OB/GYN knew about molar pregnancy. It’s very rare, true, but he’s seen it before, and most of my questions met with, “I honestly don’t know,” or “I don’t remember.” I ended up learning most of what I needed to know by researching on my own.

I think this sort of thing — including your finding of this press release — is further proof that we always have to be healthcare advocates for ourselves and our loved ones. While we may not have the training and context that allow us to be experts, we are very often the ones who ask the right questions and persist until we get the answers we need from the people who know.

I still remember the laughter I got from the moment when my Dad’s Gastroenterologist asked me if I was “in the field,” after I asked some rather detailed questions about my Dad’s case. I told him “No, I just researched what I knew and did a lot of reading.” The laughter was his later when I betrayed my ignorance and he urged me to “get back to my reading.” Still, the point had been made. I wasn’t going to sit idly by and wait for someone to dole out little bits of information when I could possibly have a positive impact by asking questions or requesting a second look at something. Besides, it helped me to feel less helpless in the face of the suffering of someone I love and in the shadow of something much bigger than I was.

I hope this clue, whether or not it provides some insight into the particulars of Justin’s case, will keep you going on that path of discovery.