High risk and going to have amnio- any advice or happy ending stories greatly appreciated as we are petrified :-(

[littlewifey]

I had my combined test done at 11 wk and 5 days. Nuchal was 1.3mm so looked fine and I'm only 28 so should be fairly low risk. However hosp lost my bloods so when I chased again at 14wks they said I had to come in very next day as bloods can only be taken up to 14 wk 2 days. According to MHD scan I was 14wk1 day when thry took second bloods but according to my dates and early scan due to spotting, I was 14wk2days exactly. Am now wondering if this could have effect on result. Anyway, got the call yesterday to say I am 1:150 so high risk. I feel so sick as know it must have been my blood results because other factors were in my favour and 1:150 is very high when for my age odds start off at over 1000. Has anyone else been here and at a similar age to myself? Also has anyone had amnio because considered high risk but result come back that baby is healthy? I have to wait til mon for amnio which means over a week until I'll know for sure :-( feel so scared

[lily06]

That's fantastic news, I'm so so pleased for you. Thank you for thinking of me, I'm actually doing ok I think.

[littlewifey]

Hi everyone, just wanted to post to say that I had my final amnio result today and all appears to be fine. It still feels surreal and I'm very weepy but they are definitely happy tears. Just wanted to give an update and thank all you wonderful ladies for your support over the last few weeks, it really has helped me so much.
Lily, if you are still reading, I am thinking of you x

[mrsbigz]

hey little wifey, just wanted to say congrats on the clear fish results - i know it's worrying but i have every confidence that your full results will be fine too, and you'll be able to enjoy the rest of your pregnancy xxxxxxxx

[misty0]

I can understand why you wont feel settled untill the bitter end of all the all the reports and tests little, but try to relax and begin to enjoy your pregnancy all will be fine.

Keep us informed x

Lilly - hi. How are you doing petal? We're thinking of you x

[littlewifey]

Hi ladies, just thought I'd post to say that I got the FISH result for the Trisomy 18 this morning and that too was negative. It still doesn't seem real though. I told the screening midwife I still wouldn't feel 100% until final result in but she said it won't change for those 3 trisomies anyway. I mentioned mosaicism but she said in her long career she's only seen this happen in CVS results not amnio. I have read cases of amnio on Internet but her comments did reassure me a little more. Roll on next week when full report (providing cells grow) should be back.
Lily, I have been thinking of you a lot over the weekend and my preliminary results feel very bittersweet. I truly hope you are getting all the love and support in RL that you and your OH deserve.

[lily06]

Thank you, Collie, it's very kind of you to post here for me. Your words mean a lot.

Littlewifey I'm sorry I have hijacked your thread with my news, please do come back as soon as you get your full results, I'm still keeping everything crossed for you, and its really great to read good news.

Blacktreaclecat thank you so much for sharing your experiece for me, I'm so sorry you had to go through it. I went to Bpas yesterday and while they were very nice and made me an appt for Tues it just didn't feel right, and that really surprised me as I was certain I wanted to go the surgical route. They also told me about DH not being able to stay, I think its such a shame they can't cater for partners at the time that people really need them close. I hope your appt at the clinic on monday goes well.

MrsBigz thank you for the hugs - unMN or not they were definately appreciated! I've decided to go the medical route, and have also taken up your suggestion of joining the other thread on here for people in the same position. I find MN so helpful both for hard facts and the understanding that comes from people who have been there too.

Misty I really appreicate you telling me what happened during the process for you, and also for the support you've given me all week, MN has helped to keep me sane.

[CollieandPup]

lily I just wanted to post to say I am so so very sorry. You've been through so much, it's so unfair. You are so strong in dealing with this with such calmness and dignity, although I am also sure your heart is breaking. I've shed a tear just reading your posts on here. I am sure there are people you will want to lean on, who have perhaps already been through this, but if you ever want a friendly ear you know where I am. Good luck with the surgical termination I hope it's as untraumatic as it can be. ((massive hug)) xx

[blacktreaclecat]

Good news littlewifey
I'm shocked your PCT won't pay that is awful. Talk about adding insult to injury. Hope you don't have to travel too far.
I'll tell you about my experience as it was at a clinic it may be similar.
Arrived about 9am, gave the letter from fetal med to reception, sat in a waiting room with H. 9.20 ish went through to see a nurse who was really nice. Did a medical history and a scan but we didn't look at the scan and she was ok with that. Thinking about it I doubt many people look.
Went back in the waiting room then was taken through to recovery for some reason (can't remember why). Taken through about 10. We did have an issue then as H couldn't come. We were both crying and hugging. The receptionist seemed to think he was making me do it and came over to intervene saying I didn't have to go through with it, H said she does. It was awful. I shouted "the baby has Downs and is dying".
Poor H was really upset so they gave him a cup of tea, he then waited in the car for me. I think it was worse for him.
I went through and had to take off my bottom half (wear comfy clothes like tracksuit bottoms or something). They gave me a clean sarong thing to wear. I went through and the Dr was really nice, she had read the letter from fetal med and said I was doing the right thing. I got on a bed thing and had to put my feet in stirrups. The anaesthetist was lovely, held me hand and also said I was doing the right thing, with a nuchal of 11.
I woke up and was taken through to a room with a load of lounger chairs. They put a warm wheatbag on my tummy which helped the pain (not very bad anyway). I came round a bit, had a cup of tea and biscuits then after about half an hour got dressed. Noone was talking in revovery which was good as I'd heard tales about people being awful talking about how glad they were their babies were dead.
They gave me azithromycin 1000mg which I took. Found out after this is for chlamydia which I know I don't have, having had swabs at the fertility clinic. It gave me diarrhoea all day so not great. Also gave me a week worth post op antibiotics. I then went home to bed and my mum. Afterwards I was relieved that day, the grief set in later.
You have had such a tough time already, we are the same, ttc 2 years with a mc in 2009. At the fertility clinic Monday - thinking of ivf.
Hope my description has helped good luck
Xx

[littlewifey]

Thinking of you today Lily and offering lots of virtual hand holding x
Thanks for all your good wishes ladies, still feel anxious about final result as know they could differ. Roll on 10 days.

[mrsbigz]

oh gosh. what a spectrum of emotions on this thread today! First Littlewifey, i'm so pleased that you got your results back today and that the initial tests show that they were clear. it must be a huge sense of relief to you and your dh - and i hope that the tests continue you in this fashion and that you have a wonderful and uneventful pregnancy.

Lily - and i know there's a thing about MN and hugs - but here, have LOTS anyway. I'm so so sorry you find yourself in this (all too common i'm afraid) situation. the waiting is the hardest part i found, but once the results are in then, although without doubt an immensley sad time, at least now you are back in control to some degree. My termination was also for T21. because i wasn't in time for the cvs, i had an amnio at 15 weeks and then a cardioscan (i think because i needed to justify our decision to terminate) to see what the babys condition was likely to be. i had the actual termination at 17wks, and wasn't offered any other option than to go through labour. i suppose my thoughts towards it are slightly different to yours as i have 2 children, whereas had it have been my first child i'm not so sure i would have wanted to experience labour the for the first time in that way. for me it was the right thing to do, and was handled very sensitively and the nurses and hospital staff were lovely. but of course everyone is different. i think you are sounding very calm amidst all the chaos around you. don't have high expectations of yourself. i remember inbetween finding out up to the termination i went through waves of complete breakdowns to feeling relatively ok and carrying on as 'normal'. there is no right or wrong way to be feeling. we're always here when you need to talk, and when you feel ready there is also a thread on here for those of us who have been through a termination.
sending you many hugs and hope that the next few days are ok xxxx

[misty0]

X posts lilly! You have been through alot already

Hello to blacktreacle, hope your doing ok hun x

[misty0]

littlewifey - fantastic news! So happy for you I hope, as egglet says, it all turns out totally fine x

lilly - we were sure about a termination too. And, if it helps, although the fact that i had to terminate was the saddest thing i have gone through (as you are now) and is something that will always be with me, it is however not a decision i regret at all.

I can tell you about my experience. I was 14+3. I went into hospital at 8 in the morning and was settled into a private room. I had been asked not to eat since mid night ready for the general anasthetic. I was just as nervous about this as the actual termination as i hadnt had one before. (this is NHS, btw, not private care) The nurses were all cheerfull, but watchfull and kind. I had to wait till very late morning before they started asking me to get into a gown, take my blood pressure ect. I was fine waiting in the little room with my OH all morning, but when it was time to be wheeled away i did cry. I went into theatre at 1 o'clock. I woke at 2.30. I was tearful at first - but once i had come round properly i actually felt an enormous sense of relief and peace. I felt guilty about this untill i spoke with some of the ladies here and found its a common feeling. The nurses kept me there untill my blood pressure was ok and they had seen my blood loss (sorry) and seen that it looked normal. Also they wanted me to go to wee before i left !? I went home at 7 ish i think.

All this time you've been anguishing away Lilly, waiting, and as you wait for your proceedure - which ever one it may be - is the worst, worst part. The healing proccess can only begin once the termination is over.

My termination went very well. I was given anti inflamatorys and antibiotics to take home with me. I bled for 4 or 5 days like a normal period. Maybe not even as heavy. No real pains. Just a bit of cramping on the first evening. First two days were ok. Third day after the termination i did break down a bit, but again this is very common. The drugs leave your system and you're left a bit down.

I wont say its been easy emotionally. Far from it. Ive shed many many tears since that day. But it gets easier, and the tears get further apart. Then you find you've been a day with a weep. Then 2 ... and so on. Once in a while something will really upset me. Ttc at the mo and its an emotional roller-coaster. I can find im sobbing over something, and know that part of me is having a grieve as well as crying about whatevers is going on at the time. Dont know if im making any sense!

Anyway, iv gone on enough! It no big deal for me to come here and help ladies who find themselves thrown into this same situation. I was helped no end here when it was my time. I wouldnt have coped without it. I have even made some lovely friends in real life becasue of our mutual support here.

Love and hugs lilly. Be gentle with yourself, and kind to your OH. You're going to be leaning on him quite hard soon. We're all here with you too. xx

[lily06]

Littlewifey I am so, so pleased for you. I really do wish you all the very best with your pregnancy from here onwards and look forward to reading happy news of the birth of your little baby boy or girl.

Thank you for all the kind words and amazing support. I feel strangely calm about it all just now, I know that the next few weeks will be hard but at least the waiting is over. ARC were extrememly helpful on the phone this afternoon, as were BPAS. We will have to travel to another part of the country for the procedure as there is nowhere close that does them. As an aside, I was staggered to find out that our PCT is one of the very few that will not fund the surgical termination so we will have to pay privately for it.

Blacktreaclecat you summed up exactly my feelings re giving birth - we have no children yet either though this is my third pregnancy, first was ectopic and required emergency surgery, the second was an early miscarriage.

[EggletinaClock]

littlewifey, I hope your test results continue to give you good news. x

[EggletinaClock]

lily - I am so very sorry this is happening to you. I've not posted on this thread before but have been following your story.

I had to terminate my pregnancy at 22 weeks due to Edward's so had no choice but to give birth. I was utterly terrified but it was not as bad as I feared. It goes without saying it was the saddest day of my life, but I was not in a lot of pain and I was very well looked after by the doctors and midwives.

The thing that helped me most overall was the support, experience and advice of the wonderful women on this board. They really saw me through the whole process from the initial scan until the termination 10 days later and I've been here ever since. Please do use us, ask anything you want and we will try our best to help you through (and you will get through this as you are stronger than you think.)

Lots of love to you.
x

[littlewifey]

Lily, I am so so sorry this is happening to you. I think you are being so very brave and I felt totally the same as you regarding surgical. I think there are some wonderful ladies on here who can hopefully offer you a lot of advice and support over the coming days based on there own experiences. Ladies (Misty, treacle, mrs bigs etc) I would also like to say how very brave I think you all are and how kind to turn your experiences into such support like that that you have offered me and Lily this week.
I can barely write this because of what you are going through Lily, but for us our DS result was negative. I have never sobbed so much as on that call! Was also negative for trisomy 13 but there weren't enough cells for 18 so have to wait for that result. Midwife said I don't fit pattern for 18 anyway though because I have high hcg 2.85.
Lily, once again my heart goes out to you and your partner, I will be thinking of you tomorrow xx

[blacktreaclecat]

So sorry lily. This was our diagnosis as well and it was the worst thing that has ever happened to me. If you haven't contacted Arc yet give them a call, they have a forum as well.
Marie Stopes/ Bpas Drs are trained to do later terminations, not sure why normal gynaes aren't. I went to Marie Stopes, they were excellent although it is hard when you want your baby so much to be in a place where people don't. You aren't there long though- maybe 2 hours max.
For me surgical was better emotionally. I don't have children yet so haven't been through labour and felt I couldn't do it for a dead baby.
Hope tomorrow goes as well as can be expected

[lily06]

Thanks misty, we have already made the decision to terminate. I have an appt with the hospital tomorrow pm and have just made an appt with bpas for tomorrow am. I am really leaning toward the surgical option I think.

[misty0]

Lilly, im so sorry to hear that news lovie. Such a hard thing to find out. I wont go on and on, i dont know if you've made any deffinate decisions yet.

I'll just say that in my case too i had the option for surgical only up untill the end of the 14th week. I got my appt. just in time for this.

Love and thoughts with you and your OH xx Stay in touch.

[lily06]

Bad news from me I'm afraid, just had call to confirm downs.

[lily06]

Thank you blacktreaclecat I didn't know that. Do you know why the nhs don't do them later but the other places do?

Any news littlewifey?

[blacktreaclecat]

Good luck to both of you.
Bpas, Marie Stopes etc can do surgical up to 24 weeks. NHS hospitals the cut off is officially 13 weeks although they would have done it for me at 14.
xx

[lily06]

Littlewifey I'm so sorry you didn't get your results yesterday. And I know exactly what you mean about not wanting to burden your DH, just the same here. Also mine is very optimistic about things where as I am always very pessimistic. Keeping everything crossed that you get your results today and that they are all clear. x

Misty and MrsBigz I would really like to hear your experiences of termination if its not too painful for you. I too have been googling for the past few weeks, and my main question is whether the surgical option still exists at 16/17 weeks plus or whether labour is the only choice.

[mrsbigz]

hi littlewifey,

i've been following your posts and i'm sorry that i've not posted much before now.
i'm so sorry that you didn't get the results you were hoping for today. i remember that feeling of waiting and waiting and having a particular date sat in your head that is the date you will 'know'. as Misty said, the worst part about this whole process is the not knowing, the feeling of not being in control, and trying to stay positive while having a (very healthy i might add) need to know all sides of the spectrum, just in case.
i'm sure you have done a lot of research - dr google can be both your best friend and your worst enemy, so if you have any questions, like Misty said please ask them here, as we have all been in the same situation as you have. The positives of your situation are your age, and that you had a very 'normal' nuchal - which are both really promising. the bloods are obviously what have raised your risk, BUT there are many many reasons why bloods can be higher/lower - and they are certainly not all to do with problem with the baby. bloods can also be 'environmental' in that they can be swayed but things currently going on with you.
I have every faith that when you get your results tomorrow all will be fine, but in the meantime please talk on here if you just want to vent, or have questions. like you and Misty i didn't want to burden my dh more than i had to as he was both suffering and also trying to be strong for me (a difficult combination!!) - so i spent a lot of time on here when i went through my experience, and also i found writing down how i was feeling very cathargic - it helped me to make sense of my own feelings and come to decisions. Unfortunately like Misty my own experience ended in a termination at 17wks - so if you have any questions about what that entails then i am more than happy to talk to you about it. FYI i had a very high nuchal (7.4mm) which was the main cause of my babys problems as we found out after amnio.
I know it's really hard, but please try and take your mind of things tonight - watch a silly film, eat, play a game on your phone (i did that a lot!!) and tomorrow, if you've not heard by lunchtime and you're getting worried, don't be afraid of calling the hospital and chasing your results - they will understand how you are feeling and am sure will do their utmost to get them to you as soon as possible.
thinking of you and sending many positive thoughts your way,
xxxxxx

[misty0]

Oh little, i've been clicking back here every so often wondering how you were getting on.

Im so so sorry you are being messed about like this. It is byond the pale to be expected to hang on and on waiting. You and your DH must be frantic.

I totally understand when you say you want to lean less heavily on him at times for fear of upsetting him more. I said those exact words on my thread when i was in your position. Its normal. Lean on us.

There is nothing anyone can say to make this any easier for you, except, maybe, that this is an administritive error. It hasnt worsened your odds. You're just understandably very very stressed and struggling to cope. Who wouldnt be?

I understand the need to research worst case scenarios too. I did the same! Its all about self preservation and gaining a sense of control. Please - (and i dont want you to think im saying this becasue i think you'll get bad news ... i dont, i think you'll be fine) dont hesitate to ask any questions about termination if you think it would help. If your mind is racing and in a spin you'll be imagining all sorts of awful things just now.

I can honestly say that even though sadly my own story ended with a term. the worst part of the whole event was the part you're in right now. The not knowing. Please look after yourself little. Eat light snacks and try to get cat naps. Dont expect too much of your self and try not to keep googling! Sometimes that doesnt help.

All my best wishes for tomorrow and to you and your DH.