Good Scan - Bad Bloods

(44 Posts)
EwokStorageUnit Tue 12-Feb-13 07:46:31

I had scan last wednesday and sonographer told us all was good, everything was as expected at that stage (13+2). Had bloods taken and was told I would get a call within a week if high risk.

A call from the midwife yesterday afternoon whilst I was at work basically to tell me risk is 1/35, I can have an amnio in two weeks time, which they can't do at my local hospital, there's a 1% chance of miscarriage, if positive for abnormalities they'll oFfer me a termination, and could I have a think about it and call them back between 9 and 5 today to make an appointment.

I knew that my risk was going to be high (I'm 40 and this is first pregnangy), so I had researched Harmony, CVS and amnio. I'm not even being offered a CVS and the thought of waiting two weeks for the amnio is just awful.

I booked myself into to FMC on Friday to have CVS, although the have suggested that I just have scan and talk through options first. If I still want procedure they will do it then.

I don't really have a question, I just wanted to share my experience. - haven't slept well, I've cried a lot and I feel numb - as if I've lost before I started and aS if I need to cut myself off before the news gets any worse.

Thanks for listening.

I too had a good scan but bloods came back 1:71 risk of Downs. I decided to wait for amnio as the risk of MC is slightly lower than for CVS. Had no problems with procedure & results came back normal. DS2 is now 4 months old.

Hope all goes well x

AliceWChild Tue 12-Feb-13 08:19:19

So sorry to hear that ewok. I had awful 20 week scan news. I didn't amnio as anything would be inconclusive and we decided we would take the chance even if we only had days with the baby. I remember that feeling of having lost it all before it started so well. I hear you. It was the worst time of my life. But I heard heaps of stories of things that others had had diagnosed that turned out to be just fine. They really helped me. My baby is now 4 months and snoring away next to me. We now have the all clear.

Take care of yourself and do what feels right for you. It's not easy but there's always hope.

GooseyLoosey Tue 12-Feb-13 08:28:43

I had bad bloods and a good scan. The results came back as a greater than 1-10 chance for Downs.

GP told me at the time that he always paid more attention to the scan and bloods were often mis-leading.

I too remember crying a great deal. I could not really believe that it was happening to me. With a 1/35 chance, the odds are very much in your favour.

Dd is now 8 and fine. I waited for an amnio too.

EwokStorageUnit Tue 12-Feb-13 09:01:25

Thank you for sharing the positive with me, so pleased it worked out well for you all.

I shall try to relax and think positive - one minute at a time maybe, but I'll do my best.

EwokStorageUnit Tue 12-Feb-13 09:01:26

Thank you for sharing the positive with me, so pleased it worked out well for you all.

I shall try to relax and think positive - one minute at a time maybe, but I'll do my best.

AliceWChild Tue 12-Feb-13 09:09:56

Just wanted to add, re the cutting yourself off thing. I did the opposite, got really engaged and protective. I felt like I was 'doing it wrong' for a while, as things I read made me feel I should disconnect. I thought I was failing by not doing so. Until my counsellor pointed out that I was just dealing with it differently and that was fine. So just wanted to say however you feel and deal with it is fine.

lozster Tue 12-Feb-13 12:12:16

Hi ewok it's a horrible situation (see my thread bad news after combined test). I too had the cvs amnio choice. My partner wanted to wait for the amnio which I had yesterday at 15 + 5. I think the risk from both is relatively low though still real. However I think the amnio risk is even lower than stated as the data is very old.

Yesterday I did ask what the difference in procedure was cvs vs amnio. Obviously what is taken is different however the mid wife said that the cvs is slightly more invasive as the needle needs to be broader and they need to 'wiggle it' to pick up cells. Honestly, I would have done it to know sooner but that said, I did make the wait till amnio and it was very straightforward and not painful.

EwokStorageUnit Wed 13-Feb-13 07:56:36

Hi Lozster, I hope everything goes well for you and thank you for your post.

It may be that after I've spoken to consultant on Friday I decide to wait for amnio.

Alice, thanks.

Will let you know how I get on.

EwokStorageUnit Wed 13-Feb-13 07:56:37

Hi Lozster, I hope everything goes well for you and thank you for your post.

It may be that after I've spoken to consultant on Friday I decide to wait for amnio.

Alice, thanks.

Will let you know how I get on.

EwokStorageUnit Wed 13-Feb-13 09:39:09

sorry for the double posting - when I post from Blackberry it seems to happen automatically...confused

suzyrut Wed 13-Feb-13 11:56:06

Hi Ewok,

A few months ago I was in a very similar situation to you, nuchal scan was 99%MOM and everything looked good walked out of the scan happy and relieved, I'm 38 and though I realised I was starting with a higher baseline risk based on the scan I wasn't expecting there to be any problems so the phone call came as a massive shock to me too. My risk was 1 in 70.

In case you decide to go ahead with the CVS I just wanted to say I decided to have one as I didn't feel capable of waiting for a couple of weeks however, the first time they weren't actually able to do the proceedure because my bowel was in the way (nice!). I did have it on the second time of trying a week later and to be honest although it was uncomfortable and it was quite invasive it wasn't painful and aside from feeling a little wobbly for an hour or so I didn't feel too bad. I have subsequently had a few small bleeds over a few weeks which were worrying and meant I had to go back in but nothing painful afterwards either.

I understand that the FMC is the leading place in the UK so it's probably worth checking with them what the m/c rates are for the consultant who will do your proceedure. Mine (at my nhs hospital) were much much lower than the stated rate. You have every right to ask this and I found it very reassuring.

I completely understand how you feel emotionally, I started to really try to back away from all the nice happy pregnant thoughts I'd been having to that point, delayed telling anyone else I was pregnant (other than it forcing me into talking to my boss) and spent a lot of time crying. My dp was great but he had his own feelings about it too which was hard sometimes. This lasted until the results came back all clear 3 days later. I'm now 24 weeks and everything seems to have settled down and I'm actually even starting to enjoy this pregnancy again a bit now I'm past the 20 weeks scan. I found it hard to get the joy back again for a good long time and think that's pretty common after a shock like this.

Sorry OP this has turned into a massive post! Just wanted to share my similar experience with you and wish you luck that it all turns out ok xxx

p.s. Good luck for your results too lozster will keep my fingers crossed for you both xxx

EwokStorageUnit Thu 14-Feb-13 08:12:14

Thanks Suzy.

Its an odd thing, but for the last two days all symptoms I had of being pregnant have completely disappeared. I haven't retched, I haven't craved and I haven't had sore boobs. Is it just moving into second trimester or has my head closed my body down?

Only one more sleep and then I'm hopping on the train to London - its been the longest week of my life.

Hope all goes well tomorrow.

Themobstersknife Thu 14-Feb-13 19:39:56

Have you had any bleeding so far in your pregnanct, as apparently this can skew the results? Good luck with your appt tomorrow.

sleepyhead Thu 14-Feb-13 19:53:56

I had the same thing. Good scan, bloods + age (40) gave a 1:27 risk.

Mine were 16 week bloods so I had an amnio at 17 wks. The baby was fine and I'm now 32wks.

We'd already decided that we wouldn't terminate for downs but I didn't feel I could wait another 6 months with the uncertainty. I know others would have made a different choice.

The odds feel overwhelming but are on your side. I hpe you get better news from the FMC - the specialist midwife did say that my bloods, although showing the pattern the look for when screenibg for genetic anomalies, weren't dramatic. It was the combination with my age that brought back such a high result.

Good luck x

ThePathanKhansAmnesiac Thu 14-Feb-13 20:36:18

Ewok, I was 38 when I had a nuchal scan, like you the scan was fine, (no nasel bone was only marker).
Like you i was at work when i got the results of my bloods. They were awful 1/10 for trisomy 21 and 1/18 for trisomy 13 & 18.
I had the cvs a few days later, i didn,t find it too uncomfortable, and didn,t cramp afterwards.
Tje results came back clear.It was a horrible time. Bloods are infamous for gthrowing up red herrings.
Sending you good wishes for tomorrow.

ThePathanKhansAmnesiac Thu 14-Feb-13 20:38:31

Forgot dd is 5 now and the biggest chatterbox. thanks

EwokStorageUnit Thu 14-Feb-13 22:22:53

Thank you everyone. So lovely to hear all the positives and best wishes.

Mobster, I haven't bled at all, apart from feeling sick and being knackered I've been disgustingly well.

Heyho, safe with my mum tonight being pampered and spoilt. I am lucky in lots of respects and have lots of support.

Sleep well everyone,

Themobstersknife Thu 14-Feb-13 22:30:07

All the best for tomorrow. Sleep well.

ThePathanKhansAmnesiac Thu 14-Feb-13 22:35:40

Sleep well.x

ThePathanKhansAmnesiac Thu 14-Feb-13 22:42:55

Can i just add, i had a brilliant home birth with dd, then couldn,t deliver the placenta.

I was transfered to bwh and lost about 2lt of blood. After removal, a consultant on ward rounds, told me about a study, showing some correlation between "bad bloods" and placenta accreta.

phlebas Fri 15-Feb-13 00:54:08

I'm another one with bad bloods & good scan - I got a 1 in 16 risk, I was 24 & pregnant with dc1. I had a CVS which came back normal (but I declined screening except the 20 week scan which I had at the FMC with my next three children). It is a horrible thing to go through, the FMC are fantastic though.

Positive38 Fri 15-Feb-13 09:31:47

ewok thinking of u today hun...hoping u get good news do let us know.
like u i had good scan.and bad bloods.i had harmony 10 days ago and now waiting for the call...petrified.
my hcg was 3mom and pappa was .44 low nt at 1.8 and perfect scans.
like u i dont feel pregnant have.detatched myself at min i am 14+2 days.
sending u support for today xx

Positive38 Fri 15-Feb-13 09:33:25

and my risk is 1:34 xx

Positive38 Fri 15-Feb-13 12:52:49

Hi Ewok
My results from FMC have shown negative 1:10,0000 risk for all 3 trisomeys
i cant tell u what a relief that was,
pls let me know how you get on today xxxx

EwokStorageUnit Fri 15-Feb-13 22:45:09

That's excellent news Positive, so pleased for you. Xx

Currently laid on my mums sofa in my jammies - couldn't deal with a two/three hour drive after coming back from FMC.

The doc I saw was lovely, did a scan, Beanie was too big to redo a nuchal, so was given option of Harmony or CVS. The scan was great, all bits evident and god Beanie has long legs. Def an olympic athlete if the acrobatics were anything to go by! Nasal bone present, heart doing what it should and no other markers. She thought the bloods were just skewing the figures and there probably wasn't any issue.

When discussing Harmony, she did mention that there was a higher chance of no foetal DNA being present because of my high BMI. The thought of waiting two weeks and then having to wait another two weeks for a re-test was (for me) unbearable, so I opted to go ahead with the CVS.

Uncomfortable and still feeling a bit odd - weird shaky weepy moment at Euston after leaving FMC, but touch wood, after procedure Beanies heartbeat was good and strong and no spotting at the moment.

Results will be rung through to us on Tuesday.

Just going to try and keep my feet up this weekend.

Would like to thank my my mum for being fantabulous and holding my hand all day, and to everyone who's posted on here. Xx

lozster Sat 16-Feb-13 03:52:09

Gosh, another wait Ewok. Glad the cvs wasn't too bad as at least you will get the clear answer that you need. I don't envy you the trip through London. I cried in my car every night driving home while I waited so I would have appeared deranged on public transport !

Not too long now - if it's anything like my amnio, you may even get the results earlier on Monday. I think they like to manage your expectations by saying longer lead times.

We're both still a bit shell shocked. Today was my big 'reveal'. Family delighted, work colleagues came to see me and some told me their difficult stories. My partner thinks I (we?!) need to talk about this more online to raise the awareness that even 1:4 is not necessarily game over. I now feel lucky to know

I'll be popping back to check on you ! That's a promise!

Positive38 Sat 16-Feb-13 11:02:15

thank u ewok we are over the moon and i really think u are going to be ok.
u are so brave hun i dont know how u did a train so glad u had your mum.
at least with cvs u get answers quickly u rest up the weekend and ill check in nxt thinking of u xxxx

lozster Tue 19-Feb-13 22:33:11

Hi ewok - I just popped back to check on you! Any news?

EwokStorageUnit Wed 20-Feb-13 07:41:13

Hi everyone - the important stuff first...tests came back as "consistent with a normal chromosome 21, 18 and 13 complement" The lady that called me was fabulous and they emailed me the results so that I could keep checking that they were real!

It was an awful weekend, absolutely convinced that every time I went to the toilet I was going to find blood everywhere :-(

Fortunately there's been no blood, although I do have to admit that I've been a bit uncomfortable. Took Monday off, as couldn't face a two hour drive to the office for meetings and certainly didn't want to speak to anyone. lay on the sofa and slept for the majority of the day.

Seriously the longest week of my life and the weekend especially. Kept bursting into tears as was so convinced that my impatience and need to know was going to cause a MC.

Thank you everyone for your support and all the positive stories, which have really helped keep me a bit more sane than I might otherwise have been.

suzyrut Wed 20-Feb-13 11:07:51

Congratulations Ewok that's great news! Just to say I've had a few episodes of bleeding post my CVS even up to 5 weeks later but everything's still fine. xx

lozster Wed 20-Feb-13 13:29:50

Great news ewok. You must be relieved or maybe shell shocked! I think that is all the ladies I've been following on here for the last fewer weeks on the clear. It's a stressful time.

lozster Wed 20-Feb-13 13:34:31

Btw - what happened to thread from the lady who had a 1:400 and was considering a diagnostic test? The thread seems to have gone. She seemed to be getting a bit of a hard time from some?

EwokStorageUnit Wed 20-Feb-13 14:53:09

Thanks Suzy / Lozster,

Blimey, think I'll about pass out if I start bleeding - did you have it checked out each time?

Yeah, I re-read that thread a couple of days ago and agree, she did seem to be taking some flak. Personally (and this is personally before people start throwing things at me) I needed to know for sure so that I could make informed decisions for my family - it wasn't just about the baby and/or me, it was about all of us (it's my first baby, but OH has children from previous relationship).

What did we do before they had all this screening and health care? Do you think that pregnancies were less stressful?

Pingu82 Wed 20-Feb-13 17:56:32

Ewok and positive - really pleased to hear about your good results! That's really great news!

I had an amnio 2 weeks ago and also had all clear for 3 main trisomys. I really dont think you can know what decision youd make about invasive tests until you're faced with worrying news (high nuchal measurement at dating scan in my case) and the huge uncertainty that brings.

Unfortunately had some bleeding on Monday so it was back to the hospital and more uncertainty sad I'm fairly sure the bleeding was because of cervical ectropion and probably not related to the amnio but what I wouldn't give for a straightforward pregnancy right now!

Also finding I'm starting to worry again now its getting closer to the full amnio results. Anyone else experiencing this?

Whatwhatwhat Wed 20-Feb-13 18:35:38

I think the 400:1 thread was mine. Thought it was still up.
I'm booked in for amino.

Last time (20 months ago) I got odds of 3800:1.

To me my odds this time seem a lot worse. Not bad. Just worse than they were.

lozster Wed 20-Feb-13 19:17:34

Hi whatwhatwhat - yes it's there! It must have been in my blind spot?!
Though I did look hard.... I can honestly say my amnio was not as bad as my blood test. I did even have a bruise though they said I would.

Pingu - sorry to hear about the bleeding that must be a worry. Yes, I'm a tad anxious about the full results too. I want my other half to take that call as I'm all worn out with it!

Ewok - I'm not sure why people find it so hard to understand a strong need to know. I like to have as much background knowledge as possible about all aspects of my life and having a baby is a pretty big issue. I thought that people on here were broadly supportive but some of the posts there seemed quite judgemental which struck me as odd as you, me and Pingu got a lot of support and there are other similar or even harder threads on here. Anyway whatwhatwhat good luck to you.

EwokStorageUnit Fri 22-Feb-13 13:17:57

I think it's the waiting that is so hard. I have to admit that I've sort of blocked the next set of results at the moment - FMC said unless there was an issue I'd just get a hard copy in the post... don't know if that's better or worse than a call.

Whatwhatwhat, good luck, let us know how you get on, fingers crossed for you.

Keep in touch with full karotype results, lets hope all the good luck continues to roll.

Pingu82 Fri 22-Feb-13 17:57:26

Got my full karotype results and all clear :D very relieved. We just have the heart scan to get through now.

Sending lots of luck to everyone still waiting xxx

EwokStorageUnit Tue 26-Feb-13 11:15:28

Fabulous news Pingu! So pleased for you!

Gingerandlemon Tue 26-Feb-13 21:04:16

Hi everyone.

I've recently been through a similar situation and reading other people's stories gave me so much hope that I thought I would come on here and post mine.

Last Tuesday (19th Feb) I went for my 12week scan. I wasn't worried at all because I'd ended up having an early scan the week before (due to some pain and spotting) and so knew the baby was ok. The 12 week scan looked fine, NT was 1.6 although I didn't then know what that meant as this is my first pregnancy, aged 32. We headed home feeling pretty good and getting all googly eyed over the beautiful photo.

The next day, however I received the dreaded phone call saying that my odds were 1:74 and offering me CVS. I spent the afternoon crying and googling (I'm currently signed off work with horrendous sickness) before talking it over with my husband and deciding we needed to know and arranging the CVS. The next day I felt a bit more together so I called the hospital to get a breakdown of my results. The lovely midwife confirmed that the scan looked great (it turned out my risk based on the scan was about 1:2900) but my bloods looked terrible (risk based on bloods was 1:17). My PAPPA-A (I hope I have that right!) was just below 0.8 and my HCG was super high, just below 6.

The CVS was on friday and went ok - I found it a little painful and was tender for a few days but the procedure itself went smoothly. I was told I would hear back the following Wednesday. However, this afternoon (Tuesday) they called me and let me know that our baby doesn't have Down's Syndrome or either of the other trisomies. I can't tell you how relieved we were. I feel like a different person to this morning!

Anyway, I hope our story helps offer some hope for other scared Mums to be. This has been a horrid week, possibly the hardest of my life, and these types of stories helped me keep my chin up a little.

Hang in there.


EwokStorageUnit Fri 01-Mar-13 15:47:42

So pleased for you G&L. xx

Gingerandlemon Sun 03-Mar-13 06:58:44

Thanks, Ewok, I'm so glad you got the results you'd hoped for, too. Also, thank you for posting your story. It helped me so much at the darkest moments to know I wasn't the only one going through this horrible process. Xx

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