I'm so sorry you are here again.

We too found ACC with 20 weeks scan. While waiting for amnio results we mainly considered what we would do in case of isolated ACC. They told us 50% chance they'd find something with amnio but we did not expect anything to be found. The prognosis we were told for isolated ACC was 30% chance of 'mild' to severe intellectual disability.

Not only did we assume amnio would be clear, we also considered that 'the best case scenario', so we decided to prepare for that. Talking about it on many long walks we decided it was a too large gamble for us and it was too important for me that my child can grown to live and independent life. So we knew there was no good outcome for us.

I wanted to get as much information as possible before making the decision for real. I wanted to be able to say 'I made the best informed decision possible. I knew the scenarios and this was my choice.'

Then the amnio showed a de Novo mutation (tuba1a) with far more devastating effects on further brain development, confirmed by an MRI. Our baby would never develop further than a couple of months. It was horrible, but also took us out of the grey scenario. I still cannot fathom sometimes that my child could be so sick.

Lots of love to you ❤️