Some Answers

Today I received a phone call from Liz. She'd called on Tuesday to see how I was doing, but I wasn't home, so she just left a message on our machine to say she was thinking of me and hoping I was doing okay. Her call today was for the same purpose, but she'd also received the pathology results from Grace's surgical exam (similar to an autopsy).

The doctor who did the exam found that Grace had no left kidney. She also had micrognathia, a small or underdeveloped jaw. Grace's left leg was "configured differently". The term Liz gave me was "talipes equinovarus" which I found is aka "clubfoot". [I did notice her one foot was turned in when she was born and even pointed it out to Josh but didn't think much of it as one of Gabe's feet looked like that at birth, too. (G didn't have clubfoot though because his tendons and muscles could be stretched so that his foot was turned correctly.)]

Grace also had an undeveloped and hypoplastic thymus or "thymic hypoplasia". I had a hard time finding any information online that talked just about this. Much of what I found associated it with DiGeorge Syndrome, a condition which can include heart defects and immune system problems among other things. Whether or not Grace had this syndrome, we don't know. Liz did say that the combination of all the things the doctor found lead her to believe that Grace probably had some sort of chromosomal problems or syndrome.

I asked Liz if any of these things would have showed up on any of the normal prenatal tests (which we decline) or on a routine u/s halfway through the pregnancy if Grace had been alive. Liz said the missing kidney would have been noticed on the u/s; the thymus problem wouldn't. The triple or quad screening might have raised some red flags. If Grace's issues were chromosomal, they would have shown up on an amniocentesis.

No matter what, Grace, we love you immeasurably and unconditionally, and you will always be in our hearts.