New thread time ladies

Link to previous thread

Just a quick note for Bubble07,

You don't have to justify your reasons for not having an amnio. It's your choice and you're the one having to take the risk, however small it might be. It is very unlikely that an amnio would result in a miscarriage, especially if it's done by someone with a lot of experience. But, still, it is a risk and it's one YOU have to be comfortable with, not your doctors. In our case, we chose not to have the amnio but waited instead for the morphology scan at 20 weeks. When that came back clear, we felt confident enough that our baby most likely did not have DS. And as it turns out, she arrived five weeks ago perfectly healthy. You can look through my posts to find out more about our situation, if you like.

Just remember, that your results might be technically 'high risk' but, really, they're pretty low risk when you consider them percentage-wise. You only have a small fraction of one per cent chance of your baby having DS! The odds are most definitely in your favour.

All the best,

Jo

Bubble07 - I agree with Jo's comments that you shouldn't be pressured into further testing. It's your decision. It's such a personal decision and care providers whilst having a responsibility to inform us of our options shouldn't try to impose their own personal views.

MumofRiley - Depending on where you have your CVS you should have access to a genetic counsellor to discuss the procedure and your results prior. Because I was told of my results on the Friday evening of a long weekend when I was already 13w4d I was not able to have a CVS as the cut off is 14w and I needed to wait until 15w4d to have an ambiocentisis. I had by amnio at Royal North Shore in Sydney and I had two telephone conversations with the genetic counsellor leading up to the appt and they also spent 1/2 hr with me prior to the procedure explaining what was being done and interpreting my NT Scan results. They also discussed what my options would be if my result did come back postive for DS or another chromosomal disorder.

All the best for the journey ahead ladies. Happy to answer any more questions you may have. xx

We picked up our scan results this morning and read them once we were at home. My chances for downs in this baby is 1:14 which I can only say is beyond distressing. We rushed over to see our Dr (well it's my Dr's husband (they work in same surgery but she isn't in on Saturdays). He was equally as concerned and he was outraged that they allowed us to pick up the report and walk off without anyone talking to us. He immediately rang our hospital and reported to them so they are looking into it and will call me on Monday. Essentially I'm going to have to have an amniocentisis or CVS but I'm 13 weeks 3 days today so might be to late for CVS.

You know what is really confusing about all of this? The NT is perfectly normal at 2.3mm and the fetus is developing normally and no issues at all. So this result is mostly coming from my blood work. It's really hard to find what is "normal" but I managed. In Downs the Free HCG has an average of 1.9 and in a "normal" result it's 1.0. Mine is 2.267MoM. The PAPP-A average is 0.44 to 0.32 in Downs and "normal" is 1.0. Mine is 0.172 Mom. So from that I would say the first is really very high and the 2nd is really very low. But I still don't have any understanding on that - I should have asked the Dr but I was so upset it was hard to focus. The info on the report says the background risk is based on the mothers age - mine is 1:373. The adjusted risk then takes into account this combined with ultrasound factors like NT thickness and heart rate and the blood results. So to pull it right down to 14 despite the ultrasound being ok means to me that the blood is very bad.

My partner has been quietly calm and reassuring and refuses to get worked up until we know something more for sure. But I was hysterical when I read the results. I'm ok-ish now but I'm stressed and depressed and expect to stay this way until we get some more information. We already agreed that if there is definitely a problem we would not want to continue with the pregnancy - which is our first one. Having already seen and heard the heart beat and getting so excited and emotionally attached.... well I'm just really afraid of what is going to be the outcome.

But I've spent hours and hours now reading through websites and I'm so glad I found this Group as I'm already a member here and this thread seems to have the best feedback I've seen. Feeling more positive after reading the posts. One lady even said her doctor said the blood levels are bullsh*t

So it's still stressing and will delay the plan to go 100% public with the pregnancy until we know, but we're just going to hang in there for now!

sarkazm76 - I am so sorry that you have found yourself here. It is a very stressful time in between the NT scan and the CVS/Amnio. It definitely sounds like your blood tests are causing the high risk rate. The 1:14 is only a probability and many mums on here have gone on to have healthy bubs. The NT fold measurement is very encouraging, anything under 3.00mm is great. But I can see why you would want a CVS or amnio. The risk of miscarriage for these is about 1:200 and 1:300 (at my hospital).

Do you know if the nasal bone was present as this is also important as research has found babies without nasal bones have a higher chance of having DS.

I wish you all the best and let us know how your testing goes. There is the optional FISH test taken from the CVS/amnio samples that can give you a result within 24-48 hours.

I had a CVS at 14 weeks but my baby had growth retardation (symptom of triploidy) so i actually had to wait for it to grow big enough for the CVS.

nessed - thanks for your encouragement I've been doing a LOT of reading online and am feeling way more positive. Seems like 90% of people with similar situation get the all clear. I'm going to not even have the NT scans/ bloods in future pregnancies and just do the CVS instead. That is how little I think of the NT process after this. And I expect my odds would be even worse next time as I will be 34 when this bub is delivered so at least 35 with the next one. Already my background rate was 1:373 so i was never going to get any better than that.

Yes - the nasal bone is present. All the developmental details says everything is present and normal and appears healthy. So it's encouraging. From what I can see the scan itself seems to hold more weight than the bloods. My main concern with the bloods is that they are off the chart high/ low compared to what is normal and even what is average compared to Downs cases. I really hope I can get some time with someone at the hospital in the next couple of days who can maybe shed some light.

I have questions about the wacky bloods. A friend told me a friend of hers had similar to me - great scan, lousy bloods - and her Dr said it was because she only has one ovary so her hormones are different so her bloods are affected. Further tests = all clear and she now has a perfect baby girl. I have PCOS and have only ever confirmed ovulation from my right ovary. Not sure if the left one ovulates at all and we know it is way more PC than my right. So I'm wondering if this could affect the bloods. I've been trying to find out on the net but when you're searching for PCOS in combination with 12 weeks blood results you get a lot of crap and nothing that is what you're looking for. I tried to ask on the PCOS support site I used to go to but my account seems to be having issues so it won't let me post. I tried to email them for help and the email came back undelivered??? I'll see if I can find another forum here in AUS I think.

The other thing that blows my mind is that most literature seems to say the combined NT scan/test only has 5-10% false positive. First of all they don't give a positive - they only give a probability. Second of all there seems to be hundreds of women all over the world with results like mine who had no reason to worry at all. Yet they say it's only 5-10%??

Hmmm.... I've been sceptical about the medical profession for many years so that doesn't help!

xoxoxoox to all

sarkazm76 - I am glad you have been doing lots of reading on the net and it has helped ease your mind.

I agree that the bloods can be affected by other things, maybe even PCOS. Your blood tests may indicate that you will need closer monitoring for other health issues. Some mums end up with Pre-Eclampsia, and their blood results were skewed. Thankfully Pre-Eclampsia can be managed.

I felt like going for the CVS straight away with this pregnancy but my OB talked me out of it and asked me to go the NT scan first. I was lucky this time that the NT scan came back ok. I don't know if you have seen my older posts but i had a shocking NT scan result with my triploidy baby last year so i had the CVS to confirm it. My Papp-A was not even detected = 0.000mom. I never found out my Free HCG from last year. Each pregnancy is different but just as stressful i find.

Thinking of you

nessed - I've now finished reading all of threads 27 and 28 and this one..... while my DP sits upstairs plaing video games online. I feel like now I've been so wrapped up in what's going on with me that I haven't given enough support back to the rest of you!

I'm stunned that you got a 0 for you PAPP-A. That's incredible. And I'm so sorry for what you went through. But I'm also very happy for you that this time around things are going well And very impressed that you offer so much support to others! It's a fantastic thing about women the way we can pull together even when having never met before. Usually my experience of other women when you're pregnant is that they just want to tell you their horror stories about 2 days in labour and tearing from a**hole to breakfast. Why do they do that to each other?!

Anyhoo.... I'm side tracking.

I'm going to ring the hospital first thing tomorrow and push them to work out what is happening with me. I didn't realise until this evening that very low PAPP-A can mean PE and more likely to miscarriage and all the other issues. Seems like more things to worry about now. But I'm still thinking positive, as best I can with the cranky hormones I've had raging all day.

I'm pretty p*ssed - QDI who did my scans probably could have contacted my doctor on Friday as my scan was over by 2pm. Then maybe I could have immediately been booked in for Monday CVS. Now 2 days are lost over the weekend.

Ugh.
Anyways.... hope you all had good weekends. Mumofriley, my due in feb buddy, I'm thinking of you too

Sarkazm - how is everything going? I hope that you were able to get the CVS today or some straight answers.

I really wish i had got the FISH test done now. At the time they didnt mention it and i totally forgot to ask, so it wasnt until we were driving home i remembered about it. Im trying to keep myself busy, but there is only so many things you can clean in the house!!(Dont want to go setting false cleanliness standards)

Hopefull they grow quick and i will know soon before the end of the baby sales.

Megan

mum of riley,

when do you get your test results back??

wishing you all the best... i'm from your due in feb group...

Just wanted to pop in and say all the very best... am thinking of you.

xx

I found this confusing too. I had 1:2 results due mainly to bloods - doctor was happy with the scan, NT measured at 2.8mm so high but still ok. Went on to have an amnio and everything was fine. My dh quizzed the doctor about my blood results but it wasn't something they could answer. I did have bleeding at the time and the doctor said it could have been a reason but really it seemed to be all guess work. As I had poor result last time with the bloods I was told to expect the same again but despite my age (40) my results came back low risk 1:1500 which I am more than happy with considering my background risk was 1:75.

Hope everyone can get some quick answers. It was over 4 years ago since I had my scare, but I still remember it like it was yesterday. All the best.

Hello ladies

Went to the hospital today and got to spend a good length of time discussing our situation with Dr Brad who was lovely. We weighed it all up and decided to go for the CVS. He said they take the earliest scan you have had to work out dates so once again I'm due on the 9th and not the 2nd. So I have 1 week to get the CVS done. To be honest my brain was telling me to wait for the less risky amnio but my heart was screaming "find out now, you can't take another 5 weeks of this stress". We have to go to the RBWH to have it done. Dr Brad's boss told him a tip to get us in quickly was for him to fax over the paperwork himself so he did that while we were there and said if we haven't heard by Thursday morning to call them.

I didn't realise with CVS there is a chance they can take a sample from a patch of cells in the placenta that will show a problem when there isn't one - mosaicism they call it. So if we get a bad result they'll want us to go on and have an amnio as well. Also that the CVS can cause problems if they interrupt a particularly sensitive cell chain when they take the sample. Man, it never ends. But then he said that this is mostly the case very early on if you have one. As I'm 13 weeks tomorrow he said the chances of those issues is low as baby has completed most intricate stages of development and is now in growth mode.

The other thing I didn't know is that once you hit 13 weeks if there is a major problem and you require termination then you have to deliver vaginally. Hearing about that was quite distressing as I hadn't really thought to much about that side of things. But at least we're well informed now about all the possible outcomes. I hope I'm not freaking anyone out talking about this - I'm one of those pretty up front people where you can talk about anything. If it's to much let me know!!

We decided to find out boy or girl with the CVS too DH says he only wants to know if everything is okay. I guess, for him, not knowing would make it easier to deal with any loss.... but I said I would especially want to know in that case so I can mourn a real little baby and not just "it", if that makes sense. Originally we didn't want to find out at all - wanted the big surprise at the end - but after seeing little peanut at our 12 week scan and now going through all this I really want to know. It's weird but I keep getting this feeling like "don't worry mum, it's all going to be ok".

V&J - we got the same sort of reaction today from the lovely Dr Brad - he didn't seem to think it mattered WHAT the levels were in the blood results, just that they = problem. How high or how low (my PAPP-A is extremely low at 0.17) didn't seem to hold any weight for him. We asked all sorts of questions about whether my PCOS could affect the outcome, or any other outside issues and he didn't seem to think so. He said if all comes back well then they will keep an eye on me for PE, IUGR and other issues that can come with low PAPP-A but he said not to worry about those things this early on.

Megan - when do you find out your results?! Feels like it's been awhile already??? Hope you're staying positive and taking good care of yourself on all fronts xoxoxoxo. Don't do to much cleaning, it's not good for the spirit, lol!

Hi Sarkazm and onthe move

Well i only had the CVS on Friday, im assuming that they dont get it started right away and then there is the weekend so they probably didnt start it until Monday which leaves me still with two weeks, unless they grow super speedy. Im hoping that they lovely lab people get straight onto these things, i wasnt really told.

Sarkazm- were you really told that at 13 weeks you would have to deliver vaginally, the mean doctors told me that if i have the CVS and find out the outcome before 16weeks this would not occur. It sounds like your doctor did a lot more better explaining, omg that freaks me out.

Im definately finding out the sex, like you guys, nicer to say he/she instead of it, give them some dignity i sort of see it as. Oh god wish id forked out the money for a FISH test.

Stay positive girls, we in the feb 2011 are a resilient bunch and i hope we are still kicking on well into christmas!

Hi sarkazm76 and mumofriley - I hope you are ok. I think we need all the support we can get when we go through this waiting. That is why i still check in here regularly as this thread was so helpful to me and so many lovely mums gave such great advice.

I have everything crossed for you both.

In case its bad news...
Termination discussion (graphic - you may not be ready to read this so just warning you)

My termination last year was done under general anaesthetic and was a D&C (i had to insert a pessary, into you know where, to start the dilation process an hour before, i think the pessary was a dilating hormone). It was day surgery. The D&C only took 30 minutes in total. I was exactly 14 weeks and 5 days gestation (one day after my FISH results). I have a friend who terminated her baby at 18 weeks (trisomy 18). She also had the pessary and then gave birth in the hospital. She didn't need anaesthetic because she said it was like a period pain only. I guess the baby is still quite small at 18 weeks. Such a sad thing to talk about but it can be hard to find first hand information on this so i just wanted to share.

Likewise - this is quite graphic re termination so please skip if you are sensitive...


Well once again the medical boffins strike again with all of them being on a different page. Thanks, Ness, for letting us know what happened with you. I think being knocked out would be preferable to being awake and labouring in any shape or form. God I wouldn't want to see the contents of the delivery. Oh it just freaks me out.

Yes, the Dr today told me any termination after 13 weeks would require vaginal delivery. If it's quite late he said they would make a potassium injection into the fetus to ensure they had passed away first. Ugh, so awful - was the most distressing part of the whole meeting.


BUT - we have to believe we will come through this ok and this won't be required for any of us! Hang in there Megan while you wait for results. Any chance you can ring them and ask for a FISH now if it will put you at ease? My Dr today couldn't even tell me for sure if they offer it with CVS. Honestly he was lovely and seemed like he knew his stuff but he did step out to ask his "boss" something at one point so perhaps he's a bit new/ green??? Maybe he just hasn't been around it enough to know all these ins and outs.

Thanks for that info NESSED. As much as it is confronting, im someone who just likes the answers. I think it makes it easier to process things, i also like to research stuff so that when the experts are talking to me i can ask informed questions, i think you get better info back from them if they know you informed.

It does sound awful though, and im now crossing my fingers even more. Ive gone back to not sleeping well, i actually keep having dreams about being in hospital and everyone bringing flowers and gifts and the baby is ok, so hopefully a sign, but i wake up almost like having a panic attack.

Im so glad i found this part of the forum, its particularly comforting having people understand what you are going through. My SIL yesterday told me she understands completely what im feeling cause when she was pregnant with both her very healthy children, she had MS for 2 weeks and was the worst thing EVER!!, needless to say she is a drama queen. I eventually got a good laugh out of it.

So many thanks girls and we will all be positive and keep chatting until feb next year.

Hi ladies,
I just wanted to pop my head in to lend a bit of support to you all. Not that I expect it helps much but having been through this myself I understand what you are feeling right now. No matter what the outcomes of your tests are and what you decide to do with the information just know that there are people here and elsewhere who will give you a shoulder if you need it. My thoughts are with you all.

Hi Mumof Riley and Sarkazm76,

Thanks for popping back in to let us know how you are going, been thinking of you both. My scare is still raw after only a few weeks. Makes me appreciate this little one I'm carrying all the more.

MumofRiley - hope your results don't take too long. I had my initial results within 24hrs and then the final results just over two weeks after. The waiting is so hard though.

Sarkazm76 - I found your comments about PCOS and how that possibly affects the blood results interesting as I have PCOS as well. I hope you get your appointment soon. I would have elected for a CVS but I was over 13 weeks when we got our results and couldn't get the CVS done within the required timeframe. I also loved your comment about how you felt your little one was sending you a message that everything is okay mummy. My husband would say that to me to try to make me feel better during our long wait.

Take care.
xx

Quick note as I just popped home to get the phone number to ring about my CVS (left it in the envelope with the scans - d'oh). I'm feeling extremely panicky about having the CVS now. I keep feeling like I should wait and have an amnio instead - so I'm feeling really confused Guess I will have to talk it over with DH when I get back to work. But I know he's going to tell me we made our decision and agreed not to speculate on it any further. Ugh.

xoxoxox

Well I was driving back to work and 5 minutes out the hospital rang me.... so I'm booked in for Monday morning. So I get a 3 day weekend - yay I was thinking on the way back "maybe they won't call - they're so disorganised usually - they won't be able to get me in and then the decision will be out of my hands because it will be to late. But it's booked now so I'm going to roll with it. I think I just have so many doubts that we made the right decision and I'm afraid that if something does go wrong I'll blame myself.

I just rang my mum and told her what has been going on and she cried which was hard. She's worried for us but also for herself as she's REALLY going nuts about her first grand-baby. DH rang his mum too and she was very quiet he said. But she said she's confident it will be fine. They both offerred to come with us on Monday but we turned them down. Don't need an entourage!

So that's my day... having dinner with my lovely friend tonight who is super supportive - she's making us pumpkin soup from scratch. Yummy. Will be a welcome distraction.


Georgie - I'm not sure about the PCOS it was just a thought. I also think that I have had hormonal issues all my life so I wouldn't be surprised if it's all related. The Pill gives me migraines, I swear being on Depo Provera is what lead me to PCOS and now this. You can't find any info online about PCOS long term studies linking to progesterone birth control but you can find a LOT of ladies in forums talking about it. We all seem to get the same issues. Vitamin D deficiency and thyroid issues were mine. Also a Dr in Canada (lived there in 2004) told me long term progesterone use was now linked to increased chance of osteo-perosis. Anyhoo.... a guy I work with, his wife has PCOS and she had 2 kids but her scans and bloods were ok. But I think they had fertility treatment too so they're a little different from our case. I just signed up for access to this forum http://www.posaa.asn.au/ but it costs money. I'm still waiting for them to activate my account too! But it seems like a very good resource so I'm wondering what sort of info I can find out. I just think Dr's are clueless about PCOS mostly - they know the std info but they have no idea about it's links to other issues in my experience. Like the Dr who told me I would HAVE to treat my over-active thyroid (like I had no choice) when treatment for it involves effectively killing off part of your thyroid cells to make it not so active. They do this with radioactive iodine and they have little way of knowing how much to give you precisely. And once it's done there is no going back. I refused treatment and got that repsonse "if it doesn't get better at your next blood test you WILL HAVE TO treat it". Good thing she couldn't see the look on my face because I was staring daggers. Well I got healthier and quit smoking and low and behold it went away of it's very own accord without any treatment. They know nothing.

mumofriley - I'm sorry you're not sleeping well. Myself, I have a permanent mild headache. I think your dreams are definitely your subconscious trying to ressure you and lower your anxiety. You're anxious when you're sleeping, your dreams try to relax you, then you wake up from the anxiety??? And agreed - MS is not really in the same bucket as what we're going through. Hang in there

Sarkazm - i had that same doubt feeling the whole time, when we were booked, everytime i thought am i doing the right thing and when we were driving there still. I think its just normal human reaction, we want to protect and make sure we dont regret things.

I like your theory about the dreams. This two weeks sucks, i really hope they started growing the test on Friday which will mean we are nearly 1 week down.

You girls all rock, im sooo glad i can read your posts, even my DH thinks you are all seriously cool, he isnt really into forums etc.

just want to say my thoughts are with all you gorgeous ladies and bubbas.

I am sad to find myself here. My background is I have three children (DD almost 6, DS 4 and DS 2.5) we had an ectopic pregnancy last year at 9wks. We took 2yrs to fall pregnant and were over the moon to discover twins. We had concerns for twin 2 since 6wks and at 13wks all seemed well but at 14wks twin 2 had passed away. I had my scan at 13wks and my measurements were good but my bloods came with a Papp A of 0.24mom. Our DS came back at 1:440 with my previous results at over 1:10000. We were offered an amnio but after discussing with our OB have chosen to wait for our Morph scan at 19wks and we are going to a specialist ultrasound place and with specifics for them to check for soft markers. If any we will have the amnio then. I am 28yo. I am currently 17wk 4days and having my scan in 14 days which is taking forever to come.

My SIL is due 2wks after us and my best friend is due 5wks after us so i'm finding it hard talking to them and till now was over the moon to be sharing the experience with the two most important people of my life. It's my SIL first baby so I had been delegated to organise her baby shower which I was so excited about and now I cry at the thought.

Mumofriley I too am in Adelaide if you wanna met up for a chat/cry if we are close enough we can organise it.

Carmie - hi there. I am glad you have come into this thread. There is so much support here.

sarkazm76, mumofriley - Just an addition to my previous post. My bub was 14 weeks and 5 days gestation but was measuring at about 11-12 weeks (i think, hard to remember all details). One of the symptoms of triploidy is IUGR so maybe that is why i was able to go down the CVS and D&C route so late. CVS was done at 14w2d.

sarkazm76 - Good luck for Monday.

mumofriley - one more week to go, hope it goes quick for you.

Hey Carmie, you've come to the right place for support. So sorry that you lost one of your babies
Your PAPP-A is very low like mine which was 0.17. I would think given the loss of your twin that they wouldn't put to much emphasis on your blood work as with multiples they say they can't use the normal blood tests. Still 1:440 isn't considered low risk by most accounts. Usually high risk is 1:300 or worse. Also you're not of an age with increased risk. I guess my point is that you have a lot of good things going on there. I know it's terrifying right now, especially after what has happened so far, but focus on the good if you can.

For me our scan was perfect - it's just the bloods - so I'm holding onto that because I know my bub came through the developmental stage ok and is moving into growth stage now!

Can I ask, don't answer if you don't want, did you conceive twins naturally? I'm just wondering because also if you've been on any sort of fertility treatment that can affect your bloods too.


mumofriley - brilliant, my DH was reading this thread today too I guess they need to see what is happening for others in the same boat as much as we do! He says he can easily pick out my posts because they're like the length of a novel!! lol I'm glad we can keep each other company here while we wait out these weeks.

I agree with this. Sorry to hear of the loss of your twin too.


sarkazm76 All the best for Monday

Well ladies you could knock me over with a feather, i got the results yesterday arfternoon, one week early.

YAY, ALL CLEAR, NO CHROMOSOMAL DEFECTS
and its a GIRL!!!!

I want to say a huge good luck to everyone having CVS or waiting for results. I had the 1:4 chance, and everything is fine. I want to send you all the biggest hugs for good luck and please stay positive, everything will be fine.

Im looking forward to my morphology scan at 18weeks, even though i know there is a chance there could be some other defects, i know im strong enough to deal with it now.

Im going to make sure i stay informed of how you all go, and want to say a huge thanksyou for all your support.

Best wishes
Megan

See ALL you ladies in FEB chat.

Fantastic news Megan, congratulations!!!

Megan that is SOOOOO fantastic
I'm so happy and releaved for you I can't even express how much!!!!
A little bubby - I've felt from the start I'm having a girl too so expecting I'll be shocked if it's a boy, lol.

xxoxoxoxoxoxx
With any luck I can update you on what's happening with us in a few days - please please please let me have FISH!!!

to sarkazm and carmie
All the very best for your tests coming up this week, i hope you get great results. Please keep us informed, i have everything crossed for you lovely ladies and also your partners, we tend to forget about the wonderful men who stand beside us, its their baby to.

I feel a little mixed emotions writing to you as i dont want to rub in my good results, but just to let you know be positive, stay strong and the results will be hopefully back before you know it. Keep yourselves busy, busy, busy!!!

Best of luck

Please don't feel like you are 'rubbing it in' at all! I really appreciate your support and I'm stoked that your results were good as it gives me hope that mine will be too

CVS today so hoping I can get some answers soon. I still have the feeling when they see peanut they'll decide I'm to far along to do it. Ugh. In some ways it would take the decision to wait for an amnio out of my hands and in others it would mean at least 2 more weeks waiting so I have mixed feelings. This morning I just want it done, good results back so I can move on!

At least my appointment is early so I can spend the remainder of the day laying on the couch being waited on!!!! My DH is needle phobic so I'm actually worried he'll spew or pass out on me Hope not!!

xoxoxox

Had the CVS today and I can honestly say it was highly unpleasant. Not particular painful as such but really uncomfortable and like the worst period cramps ever. Then, when I went to get up I thought I might either faint or spew, so had to lie back down. Then we tried again - they put me in a wheel chair and took me into a "recovery" room to rest. Waited till I felt better - about 15 minutes I think, then got up. Was ok for about 15 seconds then started saying to DH "I'm going to black out" and he sat me back down and I just kept looking at him saying "Really I'm going to black out". I don't think he understood what I meant was "THIS IS GOING TO HAPPEN - GET SOMEONE". Lol. He must have been freaked - he said my pupils dilated so they basically filled my whole eyes, all the colour drained from my face and I was shaking. He went into the hall and said to the first person he saw "I need help" and pointed at me and she said "don't worry, I'll be right back!" All I remember is succumbing to that feeling of needing to blackout, like I couldn't fight it anymore. Next thing one of the lovely doctors that did the procedure was calling my name and I opened my eyes and they were trying to bring me around. Checked my BP and heart rate and I was fine. Had broken out in a hot sweat so they were mopping my brow. I've never felt so looked after in my life! Anyway... they said it was stress. Holding in all that anxiety and coming through the procedure so well then being like "ok it's over" and that relief let's all that tension go and sometimes people get fainty. lol Seems so ironic after being so worried it would be my needle-phobic DH that would go down!!!! ha! So they kept an eye on us for about 45 minutes more. My DH found a motorbike mag in the waiting room so he was entertaining me by showing me the bikes he would like to own. Once I was ok we got up again (they had me laying in a recliner) and I was fine thankfully. Was kind of scary that something was going wrong but they kept reassuring me I was ok and so was bubs.

They will try and get us the FISH tomorrow because Wednesday is a public holiday up here for the EKKA (the royal brisbane show). So if they don't tell us tomorrow we'll have to wait until Thursday They said the fish is right 99% of the time. So now we just have to hang in there and hope for the best. But they spent a lot of time scanning bubs and all looks amazing. Was much more active this time, moving around, but refused to show us the face. lol. They got some fantastic pictures of the heart with all chambers working away and some shots of pulminary something-or-other they said was fantastic to get such a clear image and so early. Anyway it was all very exciting and lovely - such a change from my previous scan at QDI - where I will now NEVER go again. All the staff were fantastic and all the information was clear and concise. They were all so reassuring and confident it was such a relief!! This was all at the RBWH and they want us to go back there in 5 weeks for the 20 week morphology so they can be the ones to follow up on today and see that bubs is developing ok. I'm really happy about that based on todays experience. Once that scan is all ok then I'll be back to Caboolture and my GP for rest of pregnancy (all going well with these results obviously). I asked how big bubs is now - 8.9cm so has grown 1.8 in 10 days!! Also they took some measurements to give an approx weight - 100g!! They said bubs is going to be a big baby - yikes. And again, physically on the scan looks perfectly ok.

So it's all very positive and we're really just waiting for that phone call now. I feel much better informed now too about options available and the procedures and what not. Different things from what other Dr's had said. You can have a CVS later that 14 weeks for example (as mine today was 14 and 3 days). You can pretty much have one up to 16 weeks when an amnio is possible - then they prefer to do amnio because it's the actual baby's cells they get from that where a CVS is from the placenta. That they DON'T take the earliest scan as the most accurate for due dates. That in the public system if a termination is required after 13 or 14 weeks then it's by induction. However, you can go to private practices they can recommend, where they do these procedures more often and they will offer D&C later than that if they can but you would have to pay. I guess the upside is being knocked out and not having the trauma of delivery.

Anyhoo... everyone who dealt with us today was amazing and I'm so impressed and glad.

Spent the afternoon laying on the couch watching TV but the cramping had all but gone by the time we got home and I feel fine now, bit sore, bit tired, but ok. Have GP appointment first up tomorrow (booked 4 weeks ago but works out to be fantastic timing) so will be a relief to hear bubs heartbeat again in the morning and know all is well. After such a fantastic look at bubs today and such a good experience with the people I think we will be even more devastated if the news is bad. But I'm trying not to let my mind go there.

Sorry for the novel-length post but a lot happened today
Will keep you posted with results. Hope my honesty about the procedure didn't freak anyone out. I'm still glad I had it!

xoxoxox
Kaz

All the best Kaz, hope you get your results today. I had my test on thursday of a long weekend and the wait was awful. Rest up and take it easy.

OK
Just had the strangest call about my results. Looks like CVS says we are okay and no signs of any Trisomy issues - which is a huge relief. Want to know what's strange now? They can't work out the sex They're getting 13 boy cells and 87 girl cells or something like that. Now this is very confusing cause we're pretty damn sure we saw boy bits on the scan yesterday and the doctor was quite confident in telling us we're having a (so much for mothers intuition cause I've been thinking a girl all along). So I was like "so what I'm having a middle sex child?!!!" The counsellor was quite confused herself and said she would have to talk to the geneticist and get back to us on Thursday. They may have more clear a picture after the full 2 week test and also that it could be mosiacism (where it's just the particular clump of cells they took are slightly off and so good results cannot be achieved). if they can't work it out I might have to go back for an amnio. WTF??!! I've never heard of anything like this before? God it's never going to end. So I didn't actually get a wave of relief. I got this feeling of "okay good.... and now what is this new thing". Looks liek another night of research ahead of me???

Oh No KAZ, thats not what you want to hear. How confusing?? I remember the dr telling me something about the moicaism, but i do remember them saying that you would then have to have an amnio cause the results not conclusive.

on the bright side YAY, YAY no chromosomal abnormalities. I still have a very good feeling for you, its a lucky month for due in feb mums.

Firstly, Megan, congratulations. I am glad everything is ok and its a little girl.

Hi Kaz, wow, you are having an eventful time at the moment. I am glad you got through the CVS OK. I pass out at blood tests so don't worry about it. Sometimes you can get some funny results on the FISH, which is why they prepare the full results. FISH are not 100% accurate. let us know how it goes. Fingers crossed for you.

Congratulations on your result Megan. Wonderful news, I still remember vividly the relief that my good news phone call brought.

Carmie - good luck with your scan, sorry to hear of the loss of one of your babies.

Kaz - so sorry you still don't have all the answers and the agony has been prolonged. Hope you get some answers soon.

Hi everyone, this is my first time posting on here and it was so nice to find a place where i feel like im not the only one with high risk results. We are expecting our first child on the 16th feb 2011 and got a result of 1:27 for trisomy 21 on friday and that was changed to 1:108 after another scan on monday. the blood results came back perfect but it was the measurement on 3.4 that made us high risk. We have opted for an amnio instead of the cvs as we will continue with the pregnancy regardless of the outcome but i have to wait until the 7th sept. is anyone else having an amnio? its only been a few days and the wait is already getting to me!

Hi emyh, I had an amnio at 15w4d (the earliest they would perform it) after receiving a 1:10 risk factor. If I had pushed I could have had a CVS (I received my results just before 14w which is usually the cut-off for CVS) but they explained that the further along you are the more technically difficult a CVS is and this could add to the trauma I was already experiencing with a failed attempt at the procedure (not to mention the increased risk to my baby). I never thought I would be in the position where I would require one and was pretty scared about the procedure (this is my fourth pregnancy, eight years since my last). I was really surprised about how quick and simple it was. The needle hurt a little bit but I would describe it more as uncomfortable than painful (a bit like period pain). I had the procedure done at a tertiary level hospital in Sydney and they had the initial results back to me the next day and the final results 2 1/2 weeks later.

Hey everyone, im new to this page. im so glad there is a page on blood test results and scan being done and getting a positive result for Downs Syndrome. I am just so confussed i went for my 12w scan on tuesday and we saw bub and h/b everything was fine, the scan lady never said anything to us about the fold but im not sure if they are meant to or not.
we got a call from the specialist at 6 that night saying the scan results are in and the blood test he said we are 3 in 353 chance of downs syndrome. he never said the actuall results but just we are really close to being high risk. im only 25 and he said it should be about 1 in 1,000. i am booked in for amnio in 3 weeks to find out if we have d/s and what we are going to do. i think we will keep bubs but its so hard to make this decision.
thanks for listening, take care everyone xxoo

P.S I just found out my results: N.T scan 2mm, hcg im not sure what its called .68 and papp-a is .21 and was told that was very low, could anyone please explain this to me i dont understand? thanks

Kaz - I am not a member of this board but had a son with T18, so I lurk a little.

Another lady I know who had a son with T18, had a CVS done on her perfectly healthy little girl and when they got the results they said think that some of the mother's cells got into the sample but since all were female chromosomes they could tell it was a girl. In your case, you may be having a boy and some of your own cells may have contaminated the sample.

I hope that you get some more conclusive results soon.

Hi Georgie2345, thanks for your reply. its nice to hear from someone who has been through what im going through. did you get a good result with your amnio? i initially was going straight for the cvs with the 1:27 results but once they were adjusted we decided to wait and have an amnio. i thought i was ok with the wait but its been 5days and im tearing my hair out with worry. ive realised that ill be 17weeks when the amnio is done and am going to call and see if i can get it done earlier.

My Angels - Im only 26 so like you i was extremely suprised to receive a high risk result. are you going to have any further testing?

my angels sorry i just read your post again. good luck with your amnio, i have mine a week after yours. it will be an anxious wait for me so i hope you are doing ok. sorry i cant help much with the blood side of things as mine were ok it was the neck measurement that was concerning.

Hi all. Another lurker here because this is a topic matter that really speaks to my heart. I had a 1 in 8 risk of T21 with my daughter (now almost 5) and am a veteran of the CVS with FISH. At the time, I would not have been able to manage the fear and stress had it not been for my wonderfully supportive High Risk NT Results group.

Kaz, like Charlie's Mamma, I also know someone whose CVS sample was contaminated with cells from her. Not sure that's what happened in your case, but I hope you are able to get some clarity soon. I know that horrible feeling of wondering "What is going on? And when is it going to end?"

Thinking of you all & sending my very best wishes for good outcomes.

Kristen

Hi All,
Just wanted to introduce myself.

I am 28, DH is 31. We have just passed 13 weeks with our 1st child. We had a miscarriage earlier this year - so we are thrilled!

Had our NT scan at 12 weeks and found out our T21 risk is 1:57 (Background risk 1:731). Were a bit shocked, upset and confused about what to do. We have decided that we would not do any further testing, as we know we would be unable to go through with a termination anyway. We thought about doing the testing just so that we would know for sure - but didn't like the increase in miscarriage rate.

So basically now I can't help but wonder about it all the time... whether we have made the right choice, etc, etc.

Here are some other results - that I don't know much about!

NT - 2.0mm
Nasal bone - normal
Free B-HCG ~ 58.2 IU/I equivalent to 1.571 MoM
PAPP-A ~ 0.320 IU/I equivalent to 0.299 MoM

Would appreciate any advice/comments on our results. Don't understand much about the above numbers.

Hi Chervin,

I'm sorry you have to find yourself here. Getting a high risk result on the NT certainly takes the shine off what should be such a happy time for you.

If I were you, I would be encouraged by the presence of the nasal bone and your baby's good NT measurement. Both are really good signs! From what I've read, it seems that the blood work is more likely to throw up a false positive. Also, there are a number of factors that can skew the bloods; fertility drugs, placenta problems, girl babies etc. They're actually not all that consistently accurate.

We were in a similar position to you late last year. Our results were 1:135 for T21. Like you, it was the blood test that put us in the high risk category. We also didn't want to run the (albeit) small risk of an amnio, since we'd never terminate our baby.

So here's how we dealt with it. We booked our 20 morphology scan at a great clinic with someone who really knew what they were doing. We explained when we booked that we were particularly concerned with looking for Down Syndrome markers. That scan went well and there was no sign at all of the baby having DS.

Because things looked so good at the 20 week scan, we found we were able to relax quite a bit and chalk up our high risk results to dodgy bloods. Of course, we still knew there was a chance our baby girl could have DS, but we barely thought about it and were able to get excited about the pregnancy once again.

We only started thinking about it again just before the due date. We arranged for a paediatrician to assess the baby straight after the birth. I was really worried that it would be all i'd think about during labour, but of course it wasn't. And as soon as our baby girl was out, we fell in love with her regardless. And she was fine.

I know it's hard, but just try to think positively and ride out the next seven weeks. Hopefully, you'll have another good scan and your risk will drop considerably. Then you might be able to relax!

For me, that panicked feeling of everything going wrong did ease up (even before the 20 week scan) and I was able to convince myself that statistics were on my side (as they are on yours) and that even if we were the 1 in 135, that we'd cope with it.

All the best!

Jo

Hi emyh - I did get the all clear on all chromosomal disorders. I also had my 20 week morphology scan with an experienced sonographer who spent 1 hour going over my baby from head to toe to ensure there were no other problems that could be causing my high risk results. It's worth trying to push for an earlier appointment if that's what you want because they can definately perform an amnio from 16 weeks and can attempt it from 15w3d. They explained to me when I went in that there was a chance that they may not be able to perform the procedure and I'd have to return a week later but there was enough fluid around baby and they went ahead.

Chervin - Jo provided some great advice. Be encouraged that the nuchal fold is within normal limits and the nasal bone is present. My DS risk (1:10) came mainly from my blood test results. I was so distressed at the time that I don't know what the actual levels were but I was told that my bHCG was four times normal. The nuchal fold was 2.8, on the high end of normal which also pushed my risk up. Your morphology scan should be able to give you some peace of mind. We were initially unsure about further testing as we had decided that we were going to keep our baby no matter what but in the end my husband couldn't stand to see the stress I was under and felt that it was more harmful to me and the baby than the amnio would be. One genetic counsellor I spoke to assured me that even if I chose not to do the amnio early I could still change my mind and even have one at 35 weeks if I felt like I really needed to know before the birth. I don't know a whole lot about blood results but from what I've read there are many other things that can influence an abnormal results so be encouraged, odds still are that your little one is just fine.

I've been reading EB for ages now but never registered (or posted) but I guess I just felt like I needed a place to talk.
I really wish everyone who is going through this situation at the moment the very best of luck.
We had our 12 weeks scan 5 weeks ago and with my bloods I was pushed into the high risk group. 1:257 for DS. NT fold was 2.5mm so within normal range, HCG was 1 MOM and Papp-A was 0.46 MOM.
The scan showed everything was normal, nasal bone etc.
Since everything looked fine, we were looking at it as 256 in 257 of being normal.
Had my amnio and got the FISH results last week. No good Came back as positive for DS. I'm absolutely crushed.
Even the Genetic counsellor is surprised, as the US done with the amnio looks all fine as well. I'm just waiting for the full karyotype results back now, and a small part of me is hoping we are the 1 in 30000 who has a false positive with FISH.

Lillypilly08 - so sorry to hear of your results. That must have been such a shock, wish I knew what else to say. Sending hugs your way.

Lillypilly08 - im so sorry to see you had not good results. What a shock you must be feeling. I hope that you can speak with the genetic counsellor asap.
Big hugs
mumofriley

Hi. I'm not sure if I belong here.

We just had the 13 week NT scan on Monday and they have discovered structural problems with our baby's heart. We don't know anything else at this point except that it is serious, not minor.

I have to have another scan and an amnio in two weeks, and a fetal echocardiogram at some point (don't know when yet). We won't know anything concrete for another four weeks at least.

We are both in shock a bit. I feel really helpless. Also I am really nervous about seeing all my friends at mothersgroup and playgroup - everyone knows we are pregnant as I have HG which pretty much makes it impossible to hide a pregnancy. We have a 19 month old DS and I have to try to pull myself together for him.

Also, I have this problem where I don't really know what to say once I have said there is a problem. Like even writing this, how do you move a conversation on? I can't hide in my house for the next month, even though I really want to.