agenesis corpus callosum, decision

[joefrankenheimer]

Hi,

We were told at the anomaly scan on Monday (22+6) that the baby has ACC, and possibly other issues. We were told that our amnio results would come through by the end of the week, and we have MRI booked for Sunday.

Now we've been told that the tests done are only for Downs, which wasn't suspected as far as we know and that the other tests will take weeks. The MRI, we are now told, well also take weeks to get results back.

We'll soon be 24 weeks , on Tuesday. We're feeling we may have to make the decision to terminate with no further information. We have no idea what to do.

I'm really sorry you've got such a horrid diagnosis. I'd not heard of it before you posted about so can't offer any help there.

If you are considering termination then for medical reasons you can do it after 24 weeks - I'd hope they'd have told you that but there's always the chance they didn't! So it would more be a case of would you be able to hang on for another few weeks until the MRI is back. Which I appreciate is not easy emotionally at all!

For what it's worth, the amnio will check all the chromosomes, not just the 21st for Down Syndrome, at a basic level (for more you'd need microarray) but that takes two weeks generally too.

Wishing you the best with whatever the outcome.

Hi, we had a baby that was diagnosed with ACC at 19wks. We were faced with a very hard situation. Our baby had been diagnosed with an increased nuchal and an exomphalus at the 12wk scan; as time went on our baby developed oedema, and by 19wks they spotted the ACC and we decided to end things at 20wks. There is an ACC organisation with a website and plenty of info on the potential impact of the condition. There can be a wide range of outcomes. What are the other potential abnormalities? The results of a foetal MRI can be turned around within a day or two - it shouldn't take weeks. I've had at least two foetal MRIs - I forget exactly how many. The MRI will look to confirm the ACC diagnosis and to see if there are other brain issues. I guess it depends whether you have enough info as it is, or if you think it's worth holding out for the MRI. You can always go for a second opinion to confirm what the hospital is telling you. You are living through an incredibly hard situation so I wish you all strength.