anomolies at 20 weeks and 22 weeks....

[jacobsyummymummy]

Had my 20 week scan and couldnt find 4th chamber of heart possibly due to the position they said, they tried again after the weekend, but baby in same difficult position and they couldnt see... referred to fetal medicine unit next day, and obs couldnt see either (position still awkward) but came up with other anomolies such as fluid around brain, small abdomen, nuchal fold 6mm and other 'soft markers' . we were devestated, and had to go back for the heart scan 2 weeks later (2 weeks of crying and no sleeping). 2nd scan showed heart ok, and no need for mri on brain as fluid reduced, but a new different set of markers were given to us. both times I felt I was being heavily suggested to terminate. we chose an amnio and am awaiting results (Im 23 weeks now), but obs is suggesting even if that comes back ok we should consider terminating as he feels there is something serious underlying these markers, but cant tell us what. I am in hell... I am 42 and this was an unexpected pregnancy - there will be no other for me. I am so confused . has anyone else experienced number of soft markers like this?

[BlueMoon74]

:( I'm so sorry - no advice, just couldn't read and not say you're in my thoughts xx

[whatinthewhatnow]

no experience my darling but I'm sure lots of people will be along soon with experience and help. It's a hellish wait for results, I hope someone is looking after you.

[freshfruitsalad]

No idea but good luck, would help if they could give you more info so you can make an informed decision as time is getting on
We had fluid on brain in ours, high nuchal and large abdomen and other downs markers, amnio proved it was downs but we were in no way pressured to terminate

I have heard of small abdomen in DS with the problem being a tube blockage above tummy sorted with an operation at birth, ours is a blockage at other end though

[sleeplessinsuburbia]

I hesitate writing this but I was in the exact same position. I won't discuss my outcome here but I want you to know that it is normal to cry and be scared. Waiting for test results at this stage of pregnancy is horrible. The main trisomys show up in the amnio testing in 2 days, the 2 week wait is for all of the others so you may not have to wait so long.
I hope all goes well, remain hopeful but think through different outcomes. I have tears in my eyes imagining what you're going through. If you have any questions I'll try to help you x

[cupcake78]

Yep been there and it was an absolute living hell! 20 week scan was done at 22weeks. Nuchal fold was thick, heart couldn't be seen, brain was underdeveloped and too much fluid causing compression. It was generally not looking good.

We went for Amnio and were warned baby would most probably not be 'life compatible' I was passed myself. Got drugs from gp to help us get through it.

We were told Amnio results would confirm of baby was life compatible. They came back clear it was a miracle. All the drs and consultants had never seen this before and we're convinced there was a problem. The results were checked and rechecked.

We decided to continue with the pregnancy as genetically baby was ok.
I was then told baby could have growth and development issues . I was given growth scans fortnightly and told walking, talking and development might be affected. It was a truly horrible time after 3previous mc id had enough.

Ds was born 40+5 weighing 9lbs 5oz. He never stops talking, can't sit still and is a very healthy active developed boy.

I wish you weren't going through this. I hope your test results are all ok. Listen to the doctors and make your decision based on them, they usually get it right but there is hope!

You are not alone in this it happens, it's hell and whatever your outcome you will manage to get through it. Ask me anything you want.

[manitz]

Hi Jacobsyummymummy. I am really sorry you are going through all this stress.

I have had two terminations. The first one I had at 26 weeks having had a late anomaly scan at 23 weeks which found a heart problem. further investigation found the baby had half a heart. the second termination I had a baby with downs syndrome and found out at 12 weeks with a much earlier termination, he had a nuchal of 6mm at 12 weeks. I am happy to answer any questions you may have on procedures etc if you end up in a bad situation.

Your baby has now been thoroughly checked and it seems the worst options are disappearing. The heart is ok, the fluid on the brain is reducing and it seems from your post that it's no longer an issue. the 6mm nuchal would be bad at 12 weeks but at 20 is roughly fine from what I understand. I believe the cut off at 20 weeks for high risk is 6mm. What was it at 12? can you remember? I really hope you can take some hope from this. Personally I also found it helpful to also research the options that were less good and prepare myself for any outcome.

I do wonder if babies were all looked at in such detail might all have some markers but I would also be wary of the way your consultant reacted, IME it's quite unusual for them to pre-empt the results of the amnio like this. If you are driving yourself crazy can you ring and ask to speak to him and clarify WHY he said this and what he thinks it might be? As I understand legally a termination after 24 weeks needs more than a gut feeling, it needs a diagnosis and needs to be signed off by two consultants. How can you possibly decide if he is suggesting that all tests and scans might come back ok but there still maybe something unidentifiable wrong - or not I suppose.

For my second termination I was told that the baby had hydrops in addition to an increased nuchal fold and that that meant the baby's heart had gone into arrest, they wouldn't give me a definite answer but generally the consensus was that no good would come of it. i didn't want to get so far into my pregnancy as the previous time and was going mad at home so I walked into the unit and demanded a termination before the results of my cvs were in. They took me very seriously and were excellent to the point that they sped up my results and got them there and then. It sounds like you are being washed along in their timescale, you can do quite a lot by being persistent and it helped me to feel that I had some control and was doing something.

Sorry for such a long post and if you knew all this stuff already but I thought I'd just write down all I knew. Really hope that things become clearer for you over the next few days and ideally that nothing is wrong and consultant becomes a bit more positive. x

[cupcake78]

Best of luck for your results I have everything crossed for you.

[jacobsyummymummy]

Thank you all. have pm'd some of you, hope you dont mind. Sorry for those of you who have experienced similar pain and//or loss and for any sad emotions this brings up.

Mantiz, I didnt find out til I was 14 +3 so missed earlier scans.. that scan dated me as my periods stopped a year ago and I was told I was going through themenopause at 41! so was on hrt patches! but had a scan at 14+3 and 16 weeks and they said all seemed fine..

we did phone the OBS on Friday and the same thing but he said the report hadnt changed, and he hasnt got a prognosis which is what he has written in the report 'unspecified nature'. Thats the problem for me as you have mentioned. If the heart scan was available and I went there to be told all is ok, then would I have known about anything else? (I know that in itself is a double edged sword - better to know or not?).

My MW team have been useless, I think the have 'disowned' me since my referral as I haven't heard from any of them or the consultant for 3 weeks. I phoned on friday to confirm my appointment at a local FMU (it was supposed to be this morning - and I was relying on it for a 2nd opinion) only to be told they cancelled it whilst I was on holiday as I got into Bristol instead! I am fuming. The Cardiff OB is booked til september, so I have now had to pay to go private with him to get an appointment wednesday night. I think a 2nd opinion is important though.

Baby seems to be moving less. I am finding it hard to eat and drink as I have had cramping since the amnio and now seem to have a stomach bug /diarohhea (sorry tmi) , and my boobs seem to become smaller over night (no my belly isnt bigger! - Ive lost 3lbs in the last week).. I dont even think its worth calling the MW team because they are so blase, they'll make me feel like its probably all in my head.. maybe it is... I cant face going out ofthe house in case people ask about baby... couldnt take my 5 year old to his parties this weekend even!.

I am preparing for the worst and have read some sad stories about termination or ctt even if incompatible with life....and the decisions to make in relation to that. I guess I will be passed 24 weeks now by the time everything comes through.. emotionally Im not sure what I can and can;t deal with longer term and what I will regret least.

Thank you all for replying, I just feel so alone. husband is great, but cant talk about it to me.

[manitz]

I was no longer under the care of mw team once i had anything resembling a problem. I think that is par for the course and was immediately under consultant and in our hospital there is a day assessment unit which was where I rocked up to get my termination and where they rushed through the results for me. I agree that a second opinion in this case will really help and I know it's frustrating to have to pay but I think it will definitely help as the obs is being so unhelpful. Will you have your amnio results by then?

I'm so sorry you are feeling like this (stomach bug etc and going out) I felt similarly but I found it helpful to do things with my kids to take my mind off things - probably not a party though. We also sent the kids to my mum and dad's during the really hard stuff. Can you send him to grandparents or get family help? I still looked pregnant after and people caught up with me and were asking how it was going/when I was due etc. I started to trot out a standard phrase and word soon got out that I wasn't pregnant anymore. I lost a few friends but made some really fantastic friendships as I was new to the area which have lasted the course.

my husband was ok but it was much more black and white for him so we were in different places.

I found the decision really hard but it became easier once we had a diagnosis and could focus on finding out what life might be like and what we could cope with. In the waiting period I did watch a lot of box sets which was really helpful to take my mind off it. In the end you just have to switch off as much as possible as it doesn't make any difference. You will know more on wednesday. x

[jacobsyummymummy]

Thank you all, sadly my baby girl (I have two boys!) has trisomy 13 - patau syndrome we found out today at 23+2. atleast we have a diagnosis now and I am not left to be the one gambling with my childs life based on an unknown 'serious underlying cause'.

Thank you to those that have privately shared their experiences, and for all of you that replied above you will not know what comfort you have brought at a really dark and confusing time, knowing I am not the only one to go through this is a help, but I wish none of you had to/have to either.... I am still confused as to what lessons I am supposed to learn from it, I believe things happen for a reason, but this? this is something else.... xx

[freshfruitsalad]

Sorry to hear
I have no other words to say to help comfort you but thoughts are with you xx

[FiveMonths]

I am so sorry. Sending my love x x x