The Only Ones?

We're not that unique, are we?

When I was pregnant with Joan, after receiving her Trisomy 18 diagnosis, I continued seeing the same OBGYN practice that I had been going to for years. The perinatologist that made the diagnosis sort of 'released' us back to my regular doctor for routine prenatal care since there was essentially nothing more they could do for us and my pregnancy was not high risk.

So back we went to continue routine prenatal care. Except everything changed. There is nothing 'routine' about carrying a child that is not expected to survive. Maybe medically routine, since physically my pregnancy was unremarkable. But in all other ways, definitely not routine.

My husband and I joked that we were celebrities at my OBGYN practice. (He came to all of my checkups since it became possibly his only chance to 'see' Joan on ultrasound or hear her heartbeat.) It is a large practice that sees, oh I don't know how many patients, but tons. And everyone that worked there, from doctors to nurses to receptionists and office staff, knew us by name and knew our situation. We were surprised one day when one of the doctors told us they were just talking about us at their meeting -- all of the doctors together.

It struck me as odd that we stood out that much. How was it that we were one of the only, or one of very few, couples that chose to continue their pregnancy after receiving a diagnosis like this?

We couldn't be the only ones that felt this way -- that chose life for our child -- out of all the patients they had seen in similar situations.

It made me worry that maybe there were other parents that felt like we did. But they didn't think they could continue on with the pregnancy after a devastating diagnosis. Whether they didn't know it was an option or they didn't have adequate support.  This thought broke my heart. Still does.

I often wonder about those parents who ended their pregnancy after the diagnosis. Were there regrets?

My hope, through the work we do with Joan Reach, is that every parent that faces a diagnosis for their child like we did will know that carrying to term is an option, there is support, and it can be a beautiful, meaningful experience.