waiting for results - possible brain development issues

[FlightofFancy]

Hi all,
Sorry we're all here... know there are no answers but just need to get this out.

Had NT scan yesterday, and had lovely 10 minutes when all looked fine, but nuchal fold was apparently high at 2.7, which combined with bloods gave me a DS risk of 1:50. However, they wanted scan checked by someone else, who spent ages focusing on head/brain. Another consultant was called in and checked, and said they thought the brain hadn't developed properly. holoencephaly?

Obviously distraught, but feeling was the only option would be termination. As I'm measuring 13+5 it was suggested I could go on the emergency list over the weekend as 14 weeks is the cut off for the surgical procedure.

However, had to have a second opinion scan today at Georges FMU, and consultant agreed there is some issue with brain development, but not as much as thought. So have had CVS and now waiting for results. He wasn't really prepared to commit an opinion on anything.

Either way, there's clearly something wrong - I'm now going to have to suffer a medical termination if that's the way it goes - and I have no idea what's going on.

Anyone else had brain development issues shown at scan?

Hello I'm so sorry you still don't have a definitive answer. I agree with Blacktreaclecat, ARC will be really helpful and can suggest a list of questions for you to ask. It's very frustrating when different consultants have different opinions. I hope that your appointment at St George's brings more clarity

Thanks, I do want to speak to ARC but haven't yet. It's silly, but I work full time and keeping everything 'normal' at work is one of the few things keeping me sane through all this, so it's hard to find a time to call them when it doesn't matter if I end up a bit tear streaked! (it really is the silly small stuff that's hard! )

I completely understand. Another option is to send them an email explaining you can't call during their opening hours because of work. BTW is your St George's consultant next week Prof Thilaganathan? If so he was on a BBC 1 programme recently and came across really well - very knowledgable AND human (doesn't always go together IME!).

ooh, it is! that's great to know as agree that many experts seem to lack the interpersonal skills!

Oh that's good then. He seemed like a really caring person.

Blacktreacle is right, arc are fab.

You don't have to call, they'll happily talk to you via email or text, or you can sign up to the forum.

Their website is very informative, although that might just been for the 'major' abnormalities that are less rare. I'm pretty sure they can put you in touch with someone.
Sally on the forum is really lovely.

Hi, I received an ultrasound this week at 18 weeks, 5 days and the doctor stayed on the brain for so long that I finally asked if everything was O.K. She said that part of the brain hadn't developed yet, I don't know which part and I guess the other part had. She said that it had ten fibers and that at 18 weeks, 5 days she wasn't worried about it yet. But she seemed worried during the ultrasound. This is the first post I've found in two days that mention "development" and not cycts, so just checking in to see if you found anything out? Thank you in advance.

hi aggiete (sorry if I've spelt that wrong, I'm on the app and and it doesn't let you check the last post!). I'm not an expert, but from my experience over the last few weeks, if the sonographer wasn't worried then it's probably not an issue. There seem to be a lot of things brain wise that happen between 16 and 20 weeks, as we've seem a lot of change and development. Do you have another scan at 20 weeks that will reassure?

We've still got an MRI to come, at 22 weeks next week, but the professor we saw this week seemed confident that while it had developed in a slightly unusual way, all now looked fine.

Fibers suggests they were looking at the bit where the two sides of the brain meet, which was something that was really inconclusive in a lot of our earlier scans. Stay away from Google if you can - perhaps call your hospital and ask if there's a specialist midwife or Dr Who could talk you through any concerns. I've found that's really helped recently as you often don't pick stuff up properly when they're talking over you in the scan.

Flight that's brilliant news from your appointment with the Professor. Good luck with the MRI