Fetal abnormality and MRI scan?

[Happy8714]

Hi there everyone,

I'm having an MRI scan at the Royal London - hopefully on Monday, although I've been warned the date could be changed. To recap my story I'm 24 + 4 and despite an uneventful pregnancy so far, this past Monday it was found on a regular private scan that my baby has a 'septated cystic mass' attached to the back of her tongue measuring 14.5mm x 14.5mm.

The initial diagnosis is either a few different types of rare tumour or more hopefully a type of cyst. Whatever it is, is extremely rare and I've been told by two consultants that they have never personally come across anything like it before. From scouring Google it seems there are a few cases in journals which have positive outcomes, and a few which do not. I'm trying to be half hopeful for now, but so far they cannot (will not) say whether or not this will be fatal until they know more. The best case scenario is that it's a cyst can be drained, and that it won't grow large enough to obstruct her airway.

Has anyone ever had an fetal MRI scan? And what are they like? I've never felt I was particularly claustrophobic but the thought of being in a small tube is a bit daunting. Also how long do they last?

Any advice appreciated!

Very glad to hear it's not increased in size!

And yes, there's quite a few of us listening.. we may not have gone through the same things exactly (which given how unusual your situation is, is not surprising!) but we can relate to some of the emotions you're experiencing. Keep on posting, we're here!

Saggy is right - one day at a time. It's all you can do.

Thank you all for your advice and kind words. One day at a time it is! I will keep the thread updated. x

Hey all, to update I had my appointment with the surgeon/specialist and it was as good news as I could hope for.

After looking at all the scans/reports etc. it was explained to me that there are multiple small cysts on the floor of the baby's mouth. He believes at the size they were (hopefully still are, it's been about 3 weeks since my last consultant app) they will not cause issues with breathing, but the baby's tongue may protrude somewhat. His suggestion is to continue monitoring the growth of the cysts (as they can be unpredictable) and that surgery/sclerotherapy are the options post birth. He was very reassuring and though I've become a fully blown paranoid hypochondriac now, I'm trying to relax-ish and just countdown the days until the end. I'm probably going to hibernate now, as I've been pretty much as sick as a parrot for the past few months due to a combo (I suspect) of frequent hospital visits and my little ones and their constant spreading of school germs

That sounds very promising, I am so glad to hear it! You're also looking so good as regards viability now should anything need to happen quickly too.

I hope the next few months go quickly - pregnancy is anxious enough when there's nothing wrong, let alone in a situation like this. So do whatever you need to to get through!

Are you having future scans? I assume so!

I was just thinking about you, Happy. It's so good to hear everything is under control and that the outlook for your little girl is now so much more positive. You don't have long to go now til she's safely in your arms. (Ugh to the constant illness for you though.)

Thank you both ladies, it's been a big help having people to talk/vent to!

I have a scan next week, so I'm guessing it'll be every 4 weeks until the big day (?) I think I've detached myself a little bit now - haven't bought anything at all - I guess when one thing goes wrong, you find yourself in a place where you realise that you can sometimes be the small percentage that you don't want to be. I don't think the worry will be over until she's in my arms...but you're right not long to go now! So I'm just doing my kick counts and crossing everything I have that things will be ok.

Hope things are going well for you all...pregnancy eh! Don't think I'll be doing this again (She says!)

You're doing incredibly.
I wanted to share a related but different story. My friend had a baby with a cyst on his back that wasn't picked up/didn't exist at 20 week scan, but was considerable at about 32 weeks. She had an emergency c-section, the child had some immediate surgery and and she is now doing brilliantly.
It's great that you are being closely monitored, and I hope that all goes well over the next few weeks. Very best wishes.

Good luck with the scan next week. I can fully understand your reluctance to buy anything - my second pregnancy was like that. It wasn't until I got beyond 32 weeks or so (we were fully expecting to deliver long before this point) that I started to believe we may just get to keep her. It is so tough - everyone else due at the same time is talking about what they're buying, names etc etc and it is very hard not to feel envious of that confidence, and I guess of that innocent naivety too.

Anyway, I hope very much that your next scan shows great news and gives you a bit more confidence at least.