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20wk scan - bilateral cysts and collapsed stomach

(30 Posts)
thirtyone100 Fri 13-Apr-18 17:01:23

I've been lurking and reading literally every thread that sounds even remotely related as a way to calm anxiety this week (can't say it's working terribly well, unsurprisingly).

But haven't been able to find any experiences of the specific markers we've been told we have.

After enlarged ventricles spotted at 20wk scan, we were referred to FMU for detailed scan the following week. Dr confirmed choroid plexus cysts both sides of baby's brain and also collapsed stomach. He recommended amnio straight away which we did feel was an ok option for us. We needed more info and, as his major concern was Edwards syndrome, we felt the risks were outweighed.

Initial amnio results were clear for Edwards (huge relief) but now waiting on the wider array results.

In some ways it's easier now we don't have something so specific to worry about (which was all consuming and terrifying) but just don't know what to do or think in the coming weeks while we wait.

I don't know if I even have a question really, but I've seen just what incredibly supportive groups these threads can be and am hopeful someone might have some words of wisdom to share.

We've struggled for a long time to even get this far and, after eventual IVF success, it seems a pretty dreadful prospect if the worst is confirmed. Whatever the worst may be.

Duskybluebell Sat 14-Apr-18 12:15:49

No wisdom but a virtual hug flowers. I hope someone more helpful comes along soon, and that you get some answers.

thirtyone100 Sat 14-Apr-18 17:37:00

Thank you. The waiting is the worst.

Colonelpopcorn Sat 14-Apr-18 17:43:05

I cannot comment specifically on your situation as I don’t know anything. Just wanted to say it’s a horrible situation to be in, but try and be positive until you know everything you need to know. We had news at our 20 week scan we didn’t want to hear but it’s turned out ok. I spent a lot of wasted time worrying before I knew facts flowers

StylishMummy Sat 14-Apr-18 17:47:27

Good luck OP, I hope your baby is ok & any issues can be treated thanks

thirtyone100 Sat 14-Apr-18 18:51:07

Hopefully we can look back like you, colonel. We have everything crossed.

Hopingnwishing Sun 15-Apr-18 14:28:15

Oh that sounds stressful. Can I ask what exactly you mean by a collapsed stomach? Did you mean there was no stomach visible? Or just not expanded? Unfortunately it does sound like your baby has an issue which is potentially genetic. Fingers crossed for the amnio but it's not going to tell you about word and not so wonderful genetic syndromes.

thirtyone100 Sun 15-Apr-18 16:01:13

I don't really know what he meant, to be honest. It hadn't been spotted as an issue at 12wks or at our standard 20wk scan in fact. First time it was mentioned was at the FMU detailed scan and we didn't have the presence of mind to ask more at the time.

I was tempted to call and ask for more info but as it wouldn't necessarily give any answers, I haven't done so.

That might be why it's been tough to look up, as I don't have a very full understanding of the potential problem.

As a side note, I do wish they'd give you a list of 'safe' websites if you wanted to read a bit more. I don't know how many people follow the advice "not to google" (I didn't have the willpower). In the middle of the night and in a bit of a flap, it's hard to judge the respectability of what you find online isn't it!

Somersetter Sun 15-Apr-18 17:44:51

Fingers crossed for you op. I'm very much a Googler but it did lead me to fear the worst for dd (growth issues) and there turned out to be nothing wrong with her. I know your situation is different, but if you do Google, use it only to prepare yourself for a variety of (possibly worst case) scenarios, not to self-diagnose. Easier said than done I know! flowers

thirtyone100 Sun 15-Apr-18 19:23:28

I know you're right. Thank you.

TinyTerror1 Mon 16-Apr-18 16:52:03

Hi thirtyone, just replied to your comment on my post then found your post. I'm so sorry this has happened, it sounds terrifying after what was obviously proceeding like a healthy pregnancy. Fingers crossed for you that the results come in quickly and it turns out to be something easy to resolve. Thinking of you flowers

Hopingnwishing Mon 16-Apr-18 19:48:16

Hmmm... hard to know without seeing your scan reports. It could still all be nothing. Fingers crossed

Tallace Tue 17-Apr-18 17:25:28

My ds was found to have 2 choroid plexus cysts at his 22 week scan also at the FMU.

He had no other markers except a higher than average nuchal measurement of 2.8.
I did post on here at the time under an old username. It was a worrying time but my ds was fine. The cysts has disappeared by 28 weeks. I was told the main concern was for edwards syndrome as well so its great news for you that that has been ruled out.

I dont know anything about the other markers but im sure you could call the FMU to discuss it further i found them very helpful.
Fingers crossed for you, the waiting for news is so so agonising. Xx

thirtyone100 Tue 17-Apr-18 19:10:58

Gosh thanks. That's so good to hear. It seems like the advances in scanning put everyone in between a rock and a hard place. They can see so much more so much earlier but doesn't always end up as an issue ... just creates all the anxiety in the meantime. On balance, I'm still glad we can get things checked but it's comforting to hear from others who've thankfully come out the other side.

Thanks for the kind words everyone. I'm so glad I bit the bullet and posted something. It's been such a help to hear from people in/have been in the same boat. I don't always want to share all the details when I speak to family or friends in life, you just want to protect them a bit too don't you.

thirtyone100 Thu 19-Apr-18 15:09:38

Eeesh ... the waiting game continues. Just had the array CGH results from the amnio and all clear. So chromosome issues ruled out as much as they can. So next step is to look for genetic problems and we've been booked back at FMU for fetal MRI and heart scan next week when we'll be 23wks. At least we can go into the weekend knowing the next steps and not waiting on edge for a phone call. Blimey though, these emotional ups and downs really do take it out of you. My brain is knackered.

Cantchooseaname Thu 19-Apr-18 15:14:22

Such a roller coaster- fingers crossed everything resolved itself, and this is just practice stress for when they learn to roll off stuff/ eat things that could choke them/ fall out of a tree/ go drinking with mates....
Hope it works out for the best.

TinyTerror1 Thu 19-Apr-18 16:19:20

So glad to hear that thirtyone100! Fingers crossed the good news keeps on coming 🍀Xx

Tallace Thu 19-Apr-18 16:43:31

Thats great news! Fingers crossed for next week.

littlecabbage Thu 19-Apr-18 16:49:05

Again, no advice I'm afraid, as no experience of this particular problem, but I appreciate how emotionally stressful this is for you, and want to show support.

I would push for further info at your next scan, even if they can't say what your own outcome will be. All the best xx

iamloading Thu 19-Apr-18 19:28:32

This time last year I was in a similar position. Our baby girl was diagnosed with enlarged vents at the 20 week scan, after that we were on the rollercoaster of scans at the specialist centre and MRI. Like you there were no chromosomal or genetic issues identified. How big are your babies vents if you don't mind me asking? Have they diagnosed ventriculomegaly or hydrocephalus? Thinking of you, we also went through two years of fertility treatment so can relate to your nightmare x

thirtyone100 Sat 05-May-18 11:17:53

Just wanted to post a little update in case anyone comes across this thread in their own panicked search for answers in future.

Our heart scan was fine (only precautionary) but main biggie is that the MRI came back clear of further malformations. Confirmed the cysts were still there but as we already know about them, and amnio had already ruled out chromosome problems, there is far less concern about them now.

Booked in for another scan to check everything again at 28 weeks but all looking far more positive than it was.

I so appreciated everyone's kind words when we were in the midst of the fog (the waiting seems interminable) but don't regret have the tests. Information is key.

Hopefully we can get another thumbs up in a few weeks and start looking forward to our new arrival. xxx

Dozer Sat 05-May-18 11:18:57

Wishing you well flowers

SleepFreeZone Sat 05-May-18 11:26:29

Lovely news OP ❤️

TinyTerror1 Sat 05-May-18 11:34:43

Oh that's great news. So glad that things are looking positive for you! Let us know how the 28 week scan goes if you remember. Hugs xxx

SparklyglitterAnddiamonds Sat 05-May-18 11:47:41

Fantastic news smile

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