support thread for women who are pregnant or TTC after a termination for abnormalities

[katiecubs]

Hi girls - i hope this becomes a useful area

Hello,

A really quick post to tell you that my scan today went wonderfully. I saw 2 separate consultants and was scanned for over an hour seeing both 3D and regular views. The brain is developing and they can see the start of the bones beginning to ossify (become solid.) They are both really positive that we are not repeating history but I am going back in 2 weeks to check that the bones have continued to form.

The only negative from the appointment was my nuchal fold measurement. It was an average of 3mm which is considered high at this gestation 11+4. The scan risk was 1 in 65 reduced to 1 in 347 with bloods. They have offered me a CVS but we have a few days to decide what we want to do so we are going to consider this carefully over the next couple of days. I know that this is not really high at all but obviously it is still a chance....I feel that it is stupid to worry about this number but based on everything else I also feel that I need to know. I am not sure if that is my scientific brain taking over to protect my emotional side? IYSWIM.

Anyway, I cannot think of that right now. I am going to enjoy todays results. Another step onwards and upwards.

Thanks for all your thoughts today. I was thinking of you all when being scanned and it helped to know that whatever the outcome I would have someone to share with.

Thinking of you all and welcome Bigmomma and Shangrila It is nice that we have found somewhere supportive to be.

Hi all

Bigmomma, I am so sorry to hear what you have been through. I had never heard of the condition your baby had. I agree with Katie: the risk assessment sounds like guesswork to some extent. And I really hope the 20 week scan gives you peace of mind. But I do know how it feels to wait between the nuchal scan and the anomaly scan as I had a condition incompatible with life detected at 20 weeks that wouldnt have been visible at 12 weeks or detectable via cvs/amnio. In a way the wait from 12-20 weeks is even harder than that first trimester wait. We will be here to talk to though, please do keep pouring it out.

Allstar, great news about the scan. What relief you must feel. About the nuchal fold measurement - I think 3mm is still in the normal range, isnt it? just the higher end. Though not sure about at 11 weeks 4 days. Could you delay the decision on the cvs and have another scan in a week (there'd still be time to do the cvs after that) and maybe the measurement would look better? The combined risk is in the 'low' category - what was your background age risk before the scan and bloods? I can see why you would not want the cvs and see why you would want it. I guess in the end you have to decide. But another scan might help, I suppose.

Big Momma, Allstarprincess and Little poot too
You have made a big step to open up your tender hearts here - it is not easy but can help maybe to articulate the pain. Well done to you all - you have arrived at a safe station.
Congratulations on your pregnancies all - it will not lessen the pain of loss I guess but it will bring what you want and deserve.
I am over the corridor in the other room - if you want to share any of the recurring traumas of ending a pregnancy, well we are all there to listen, offer hankies, tea and hand holding.
With love
Bee xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Hi guys. Thanks for your welcoming words and support. Had a good old cry last night after posting which I have not done in years but it helps to let it out!

Pena Shokeir is very hard to get any information on. I was lucky in a way that the medic at the FMU in London had seen one other case so knew what he talking about (my local consultant had never seen it before, that's why I got the wrong information). Although I did not believe them at first and thought that there must be something they could do. The only information I could get was from an consultant in Los Angeles who confirmed the prognosis and also said that this is rare even in the US.

Am trying not to worry and the only way to do that is really not to think ahead and not get too excited. I have already decided not to buy anything until after 30 weeks. With my twins I left it until 35 weeks when I finished work and I had them at 37 weeks! I think that is the difference this time, I am not working and the DCs are at school so have too much time on my hands to think. With the twins, I had quite a stressful (but enjoyable) job to keep my mind off it and I used to be knackered in the evenings so had early nights. Will have to find something to do and quick!!

Hey I have just looked up the FMU at the UCH in London and apparently you can self refer. Now with my twin pregnancy, I was referred there by my GP (was a 6 hour round trip as we'd moved) for my 12 week scan so I could have a proper indepth scan to pick anything up as they knew what to look for. Nothing was seen so I was discharged to my local consultant.

I am wondering why this has not been suggested with my current pregnancy (12 week scan was normal one at local hospital, still awaiting nuchal results). I see that the consultant who diagnosed DD2 is still there (picture is on website and I will never forget his face)! I am wondering should I contact them and ask them whether they can do a scan or will that seem like I am going the heads of my GP/midwifery team?

Allstar, I'm glad your scan was good and that the hospital have obviously been very thorough in their care of you . Re the nuchal fold, were they able to spot any physical markers - nasal bone, feet OK etc? Lins knows more about these as she got a scan after her screening gave high risk figures again (though with low nuchal fold), and was reassured by the second scan. Obviously there aren't always any physical signs of chromosomal problems, but if they are NOT there then it is reassuring. I guess this might be why they are offering you a second scan in 2 weeks time - I think Lins's scan was around the same time in her pregnancy (see here, Linspins Wed 22-Jul-09 20:45:30).

Sorry - interruption, our cat is being really annoying and distracting me, so better go and annoy him back... but I'm glad you are able to relax a bit today!

Hi BigMomma - I think FMU was where Lins went for her scan; when you've had a rare condition plus the warning that it MIGHT reoccur genetically, I think no-one would begrudge you self-referring to another institution, particularly one where you've been before that actually has experience of that condition. You could always test the water, ring and see if it IS possible and whether you can see your previous consultant. How long until you get your nucal results from your own hospital? As I just wrote for Allstar, I think Lins had an appointment at the FMU at around 14wks, at which time they were able to start looking for certain physical markers, so if you let them know how far you are on perhaps that's what they would do?

I see no harm in it, and if it reassures you and helps you breathe easy, it's certainly worth looking into.

Morning,

I have thought about my stats all night and think that I am going to wait until the next scan to check for other markers. This is our final pregnancy one way or another so jeopardising it just because I need to know feels wrong. The adjusted number is not high and if I had been given this with my DD then I would not have even considered another test. I think I am perhaps skewing my thoughts with worry.

Numptymum They did see a nasal bone as I asked if one was present as soon as I saw how big the nuchal fold looked on screen. I did not ask about feet as I did not know to but I can ask next time. I did see fingers though

Bigmomma I self referred this time to St Georges Tooting they are not my closest but were the hospital who carried out our second opinions and terminations before and also the hospital where our genetics testing was undertaken. I was told by my doctor when I notified of pregnancy that I could 'based on previous history, choose anywhere I felt would offer me the best care.' I think the larger hospitals like to receive difficult or unusual cases.

Have a good day all.

Hi Allstar - I think feet is more for patau's or possibly edwards (they look for extra toes, and 'rocker bottoms' ie prominent heel) but there are probably more obvious markers they would spot first (facial features, blood ducts etc) which is why I linked to Lin's post. When I had my own scan at 15wks the consultant seemed to be checking out everything - we saw all 4 heart chambers (so I guess he was also checking out the veins at that time) and he also looked at the thigh bones, feet, hands, shape of the head, facial features and the brain. So the next scan will probably give you a lot more information and hopefully the reassurance you need .

(just have to share that I had some VERY odd dreams last night - I was in a future Brighton with a very different skyline, at a hotel preparing for and performing in a music competition. It turned out that Vic and Bob were also going to sing with us but when they came on stage Bob had really odd black eyes (irises, not the punched look) and I was really scared of singing with him. Where the heck do dreams like these come from???)

Scan ladies - god the obsession about the right thing to do is so hard. Just to let you know that I had both my last two disastrous pregnancies scanned at the FMU at UCH; just the sight of the building can set me off big time. They are incredibly good and now Professor Nicolaides is overseeing some of the work there.
If you cannot get referred there however, you could always go directly to the Fetal Med centre on Harley Street to have their incredibly in depth scan - i think it is less than £200 if I remember rightly. They check for everything, everything that is possible to pick up at such an early stage.
I have been there too.
I hate scans.
Good luck; get the information you need - it is very important that you have as little stress as possible
Bee xxxxxxxxxxxxxx

Morning all. Have spoken to the FMU at the UCH and they said I should definitely be referred (she found my notes immediately which is pretty good as I was last there almost 8 years ago!) so I have got my midwife to speak to my consultant, hope to hear from them later. I can't self refer apparently as I won't be having the baby there as it's too far away.

I should'nt have to wait too long as there is no waiting list so hopefully I will get the reassurance I need!

I won't be getting my nuchal results until sometime next week although I know that won't show up the syndrome anyway.

Good luck to everyone going through scans at the moment and yes, I remember the innocence of my 1st pregnancy when my only thought before the 1st scan was excitement and getting a good photo without any idea whatsoever of what could go wrong!

Allstarprincess - you sound like you're making a good decision on your scan results, and I'm so pleased that everything apart from the nuchal fold seemed perfect. Your odds of 1/347 sound really good to me - mine were 1/4 after a nuchal measurement of 4.5mm, so that didn't sound good whichever way you looked at it. There was a nasal bone though, even though bean had downs, so guess that's not always an indication. I'd like to think that if I was told at my scan that my odds were 1/347 I'd be able to rest at that, but I suspect I'll need the cvs, almost to validate what happened the first time - if that makes any sense? Long way to go before I get to that though, so will see how (in)sane I'm feeling by then. These decisions are so hard aren't they - there just isn't a right or wrong answer in some cases.

BigMomma - really pleased you're getting such responsive service from FMU. It's great to see the services get things so right, when there are so many awful tales of them getting services (and tact/compassion) so wrong. I was really lucky with mine - at the Rosie hospital in Cambridge - where all the staff I dealt with were incredibly sensitive, sensible and kind. Hope they can give you reassuring news in a few weeks time.

Can I ask anyone/everyone a really stupid question? I seem to be coming down with a cold (feeling rubbish but pretty sure its not rubbish enough to be 'flu). Presumably that's ok, pregnancy-wise isn't it? Do I need to be careful to keep my temperature down or anything? Or am I just being too anxious?

Forgot to add - I'm with you Bee - everytime I even see signs to the hospital now I get that sinking feeling in my stomach. Not looking forward to going back....

Hi Bigmomma, so sorry to hear about what you've been through in the past. I remember feeling so isolated when my last two pregnancies were diagnosed TS21 but being an, unfortunately, fairly common syndrome I was able to arm myself with a lot more information over time which was helpful in some ways. It must be terribly bewildering and scary dealing with something so rare. I am under the care of the UCH Fetal Med team who have given me excellent care in the past. I believe Mr Pandya, who is the head consultant of FM there also works privately at the Harley St FM Centre as well as another private practice at Portland Place. So I think you will be in very good hands.

Allstars, pleased to hear the scan went well. Let us know how you get on over the coming weeks.

Justa, sad times honey. Look after yourself and your family. Cuddle your bubba.

Aargh, scans, hideous! One of my facebook friends has just posted a scan picture as her profile pic. A lot of people seem to do this as a way of announcing their pregnancies. I so wish they wouldn't, I associate the image with such hideous memories that I find seeing other people's really quite jarring.

How is everyone feeling today? This pregnancy is making my sinuses really congested (happened to me in my 2nd one too) so I was awoken several times in the night by my OH telling me to stop snoring . I'm amazed that this is the first pregnancy so far where I've not been ridiculously hungry all the time - just as well though as post Christmas I am already finding my jeans somewhat tight.

How are the rest of you doing? Shangrila, Lins, Katie, Numpty, Cantdo? Bee, bless you, mother hen popping in to see how we all are when your poor head must be scrambled at the moment. I hope you're doing ok.

Allstar ? really glad the scan went well yesterday ? what fantastic news! As some of the other ladies have said the 3mm nuchal is still in the normal range so I think you are doing the right thing waiting for your next scan. I wouldn?t risk going through the CVS when your odds are still really good.

Bigmomma ? also great news you can be referred. I have not been to FMU but have heard some fabulous things about it so hopefully the scans will provide you with much needed reassurance.

Numpty ? what a mad dream!! Do you have popstar aspirations? Perhaps you should apply for the next X Factor  Thanks also for wishing me luck with my meeting today.

For people who don?t read the other thread I was told yesterday that I was getting made redundant ? I am very scared about what I am going to do financially soon as I had a good job with a good maternity package ? now I obviously won?t get that! Today I have a meeting where I will find out what money I?m entitled to and when I will be leaving ? cross your fingers they are kind to me!

Littlepoot sorry you are feeling ill ? I wouldn?t have though it was anything to worry about but perhaps if your temperature does start to rise you could call NHS direct to check? Hope you feel better soon.

Kittens I totally agree with you on the scans ? plus think it?s a bit of an invasion of privacy for the baby! Am also so so hungry all the time, I actually can?t believe how much I am eating at the moment but I have to keep at it as I start to feel sick if I?m not full.

Love to all xxxx

Littlepoot, sorry to hear you're feeling like crap. Unfortunately pregnancy lowers your immunity so getting a cold is often inevitable. Annoyingly you can't really take much for it but what I do recommend is drinking lots of water, lots of hot lemon and honey (manuka if possible) drinks, you are allowed paracetemol as it isn't absorbed by the little one - that should help you feel a little better and keep any threat of temperature at bay. The other thing I swore by when I've had colds during pregnancy and otherwise is Vicks Vaporub. It's brilliant stuff. It even seems to calm coughing a bit too. I just rub a big dollop into a tissue and sniff it regularly throughout the day. Also great in a bowl of boiling water for inhalation - you only need a teeny bit for this as it's quite pungent. I hadn't really used Vicks since I was little but I found it a godsend when I've had colds in pregnancy. It's really got me through the no medicine rule!

Katie, what a worry. I hope everything works out ok. Work is pretty slow for both myself and my OH at the moment (we are both freelance) so we're a little nervous too. I think this is an old jewish saying, my grandma tells me constantly as does my Israeli friend - Babies bring their own luck. Hopefully, whatever happens you will be ok.

Thanks Kittens thats a really nice thought

Thanks kittens - I'll aim for the vaporub. Hopefully it won't come to much - I've got a birthday party to go and pretend I'm drinking alcohol at this weekend! I just never tend to get colds and stuff, so guess my immune system is definitely pregnant-ified.

Katiecubs - that really is crap. Let us know how the meeting goes. We're all in six months of 'pre-redundancy' procedures here, but I don't think it'll end up being a problem. Basically they're restructuring and have to cut numbers slightly. Rather than sacking someone, they've warned us all our jobs might be under threat. Nice. But one's already found a job somewhere else and another has announced she's preggers, so the numbers are going down on their own. If one or two agree to early retirement (and there are a couple of contenders) then we might all be safe for another couple of years. Otherwise I'll be back to you for advice in the spring.

Numpty - I want your dreams! I dreamt the alarm went off. And then the alarm went off. Rubbish.

Believe me, no pop star aspirations here! So no idea why I ended up some kind of backing/vocal group. Would like to meet Vic and Bob but think I would be terrified of being very boring in their surreal company... once got kissed (on the cheek) by Robbie Coltrane in a case of mistaken identity though, that was weird.

Meeting was ok actually - they have said i will get 4 months full pay which is better than i expected. At least i don't have to panic right away anyway, will probably finish up next week. They have also said they might be able to offer me one day a week freelancing which could be a big help as not sure how easy finding another permanent position will be (really don't like the idea of starting soemwhere without telling them i'm pg, seems pretty dishonest)

Anyway feeling much better than i did yesterday about everything!

Know what you all mean about scans, and scan pictures on Facebook. I'm not actually on Facebook, which helps me avoid them, but I don't really get why people email their scan photos around.

Katie, better news on the package. I know what you mean about not telling new employer about pregnancy - it is legal, but it would feel a bit off. Still, if you had to, you would!

Katie - something occurred to me this morning over the hoovering - might or might not be helpful. But if your work is the sort of work you could do on a freelance basis, and your old office can offer you some work to get started, is it worth using this as an opportunity to set up as your own boss instead of getting another position? I work with a woman who did the same after being made redundant and she loves being in control of her projects and workload and in her line of work and with her contacts it's not been difficult to keep work coming in.

Just a thought - might not be appropriate in your case. For what it's worth - I'd have no qualms about going for jobs without telling them you're pregnant. You're no less capable because of it and companies have to deal with maternity. If you did tell them, it might actually put them in a more difficult position because if they didn't want to offer you a job then they'd essentially have to prove it wasn't because you're pregnant. Hope it all works out for you and you're having a peaceful, if slightly nauseous, weekend. xx

Ah thanks for thinking of me Littlepoot - it is an interesting idea as i would love to work for myself but i'm really not sure it would work out in my line of work. It would be difficult to find contacts you see.

I know i shouldn't really feel bad about taking a job and not telling them i'm pg but i just feel it may be a bit awkward. I might not have a choice of not telling them soon anyway as the bump will start to give it away (fingers crossed anyway)!

Having thought about it some more i think i'm going to take the opportunity to get some experience as a teaching assistant in a primary school - i have always wanted to teach and but have never had the time to get the experience i need for my PCGE application. Starting to see the whole thing as a great opportunity now

Hope you are having a nice weekend too - terrible weather so have just been in doing the hoovering too! xxx