Has anyone been told the sex wrong?
Has anyone been told there baby has not downs etc but then born with a trisomy?
Thanks
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Has anyone been told the sex wrong?
Has anyone been told there baby has not downs etc but then born with a trisomy?
Thanks
I have no idea but I am interested to know. I am having my 12 week ultrasound in London and was wanting to do this test depending on what clinic they send me to! Not sure what the 12 week screening entails in London and if it's different from the US but if I can find out at 12 weeks the gender I will be happy lol
They send the results back to the us as there is no lab in the uk yet. So it takes 2-3 weeks. You can have it done on Harley street but only a few clinics in the uk offer it.
I have emailed the clinic and asked them if they don't get back I will phone them on Friday and update here
A girl on here was told her baby could have an anomaly but then it turned out the baby was fine. I do think it's a very accurate test and certainly safer than any of the alternatives.
The harmony test is over 99% accurate on gender determination. It also only has a less than .1% false positive rate. Which basically means it is very hard to get a positive but be carrying a healthy baby. Which is good for the "lets not freak people out for no reason" clause. Lol.
And as far as how accurate it is for detecting the trisomies, it's highest accuracy is T21, very closely followed by T18. Both of those are 99% range (in the same study of 230 mothers, one T21 was missed, two T18 were missed...which is basically less than .5% missed diagnosis). T13 was about 8/10 detected. Although given the severity of T13, I imagine the sample study was smaller.
So for your question...you would have less than .1% chance of being told no Down's syndrome and then having a child with Down's syndrome.
Greesemonkey, presume you are having this done privately as Harmony certainly won't be done on the NHS. 12 week scan in UK entrails bloods and a scan which will show fetal heart action, crown rump length and NT as well as looking at skull, brain, spine heart, stomach and the upper and lower extremeties for any potential abnormalities. You basically also get a background risk, dependent on your age and then an adjusted risk based on your blood results for these. Interestingly, some clinics in London that do Harmony won't tell you gender though, just chromosomal abnormality risk eg Fetal Medical Centre, whereas others will, so best to double check if you want to know gender. I know Polli had the Harmony Test at the Birth Centre in Harley Street where they do tell you gender. Good luck xx
I think GT77 did the MaterniT21 test. It came back XXX but baby is XX.
I think they are basically the same test, but one gives you a y/n answer and the other gives odds.
I disagree. For anyone who is told down 21 is usually correct but not for 18 or 13 and sometimes a boy comes up for gender instead of an. Xx. Also, I heard its wrong for 18 and 13 and xxx and xxy 1 out of 10 tests. I know for a fact my hcg is off the charts I can't help but think that they thought if I'm not two in there how come my hcg is so high where is extra xx coming from. We don't know how these tests are done and how. If u r 35 and above then get a cvs or amnio .
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Disagree with what part???
The fact is that these are pretty darn new tests and we probably just can't say about levels of false neg and false pos tests. They're probably going to happen in both directions
That's not how HCG levels and XX vs XXX work. They literally were counting chromosomes in the fetal blood in your blood****** and miscounted something. Human error.
I BEG you guys not to go rushing in to get a CVS or amnio if they are not needed. These tests may not be perfect but at the least they can tell you if you even need a more invasive test. There are people on this site who lost perfectly healthy babies because they were pressured into having these invasive tests done solely because they were over 35. I would take a false positive result on a blood test any day of the week rather than lose a healthy baby.
I disagree with that it's 99% accurate. You go thru what I went thru and I just question those tests. I was alwAys planning on getting the amnio but that's just me. I know a Ton of my friends I am 36 and even a friend who is 41 who just got materni21t and that's it. You live my experience and get a false positive and then it makes me question the test. I'm not saying it's wrong all the time but for me I would of rather of saved myself from a heartache and skip any tests that can give me a false positive. If I would of known ahead of time that this could of happened then I would of least know but I am just upset that they put a test on the market that gave me a week of unwanted anxiety. I'm taking the amnio on dec 30 since I want to double check the results Again since of the results that came up with magerni21t. Any test that is 100% I trust. I'm not saying that all of you guys shouldn't trust the test, but for me the test was a nightmare experience for me and was not fair.
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I decided for me since mAternit21 came up negative that I need to be certain. I would be devastated if anything happen but I need to know for sure. Materni21 not the cvs has put the doubt in my mind and for me I want two tests to prove it, instead of both of them equally each other out. My amnio should be perfect but I just rather know then having a regret since materni21 has made us question everything.
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GT I do totally understand that you went thru the wringer over the Materniti21 test and it may very well turn out to be the case that you're correct, over time it may become apparent that it's not 99% accurate.
I personally, based on information that I got firsthand from a doctor and my experiences on this site, do not recommend anyone get CVS/amnio without some good reason aside from being over 35. Those tests are invasive and do carry risks with them. People have lost healthy babies of their desired gender after having them. Personally I would take the risk of a false positive on a blood test that cannot do any harm (which I could then follow up with a more invasive test if need be), over the risk of losing a baby, but that's just my opinion and you are of COURSE entitled to yours.
I do not recommend you have an amnio on top of the CVS. While amnio can detect neural tube defects that CVS can't, ultrasound is safer and can also detect NTD. Since you have already had your CVS and gotten the all-clear from that, I feel like a good ultrasound is going to be more than enough to rule out any serious NTD.
Gt - did you have the amino and cvs? If I was to have a invasive test I would want it to be 100% certain or it's not worth doing over any blood test.
I wonder how many people do the harmony and then the invasive one as well?
According to my ob and geneticist, you would only do an invasive test (amnio, cvs) if the blood test like (materni21/harmony) came back positive. Otherwise it is strongly not recommended.. These tests are not just another blood test, like the old quad screening tests. They are unique in identifying the fetal dna within the mother. Of course there could be a 1%error rate.
From my understanding the goal is for these test to be the gold standard over invasive testing, since those pose so much harm to the unborn fetus.
The quoted 99% is from peer reviewed controlled studies of over 6,000 women. As that is the data available. I don't at all discount anecdotal evidence, but in the percentages we have available to us, it's 99% accurate when diagnosing Downs Syndrome and T18. The stats on accurate gender determination were also 99%. But that still leaves 1% and sometimes people are unlucky enough to be in that 1% (I've been there with other things) I do feel for what you went through, but agree with Atomic that when a test is needed based on age or history, it's far better to choose a minimally invasive one with a low false positive rate. That is where my post was coming from. Until it is more widely used, the stats we have give us a fairly high level of confidence for the ease of the testing procedure.
I'm so sorry for what you have been through GT77 - absolutely stressful, scary and horrid, so totally get where you are coming from with this.
However, I certainly wouldn't automatically recommend anyone over 35 doing an amnio or CVS, if Nuchal test and 12 week scan is ok and you have never previously had a problem. If anything worrying comes up, then yes definitely worth doing. I had my 3 DS's at 38, 41 and 43 and although obviously the risk of Down's was much higher because of my age - the fact that a nasal bone could be seen and all looked fine at the 12 week scan certainly made me decide that I didn't want an invasive test and the Dr agreed. That said, if a non-invasive test, such as Harmony had been available in the UK, I probably would have done it with DS3 given my age.
I got the amnio and it was not painful at all. The cvs hurt a little I even said to my DR I would do it again. After my amnio my dr showed me the heart beat. My dr told me once he gets the needle in he does not move it unlike some other doctors may. All I know I was shocked how fast it was and how not painful it was for me. I understand your doctors all recommending the materni/harmony/verifi and others. These test is just a screening not a diagnostic test. I think it's great it's our choice. It's a 90% correct chance, but there will be that one person who comes up with a negative test and they find out something is wrong my dr said. I trust my baby's placenta & amniotic fluid more then I would trust the blood that is taken from my arm not my baby. This is me though not you. No one wants to take the risk and get an amnio/cvs since something may happen, but everyone needs to know that materni21/harmony/verifi has their risks also! I just want everyone to feel comfortable with their decision that this test isn't 100%. I am not saying that any of these tests are. My dr and atomic recommended I did not take the amnio, but I wanted to be 100% sure. Yes I got the cvs and the amnio. I took mateni21 and I hate that test!! I looked up so many stories on reverse results and look them up. And, I was told that materni21 is not FDA approved but only for Down 21. So that means xxx, xxy , turners syndrome, down 13 & 18 there can be negative and positive wrong results in both directions. I look at this situation as me being lucky. I was told also if materni came up negative to trust it! I'm thankful I found out the truth about this test. I don't recommend any tests that are screenings.
FYI materni21 and I'm sure the other ones is not even FDA approved. I only learned that it isn't FDA approved until after I had a false positive. It would of been nice if they told me before the test. It would be nice if they told the public about false tests since no one knows it exists! Luckily, no one over 35 is forced to take an amnio or a Cvs but luckily we know the possible risks of not taking it and whatever anyone decisions are I feel it's my responsibility to let all of you know both sides. There are false negatives with these tests too!
My amnio came back normal for fish.
I'm waiting for full results next week, but all looks good!!
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I just wanted to chime in bc when I was preggo with DS in 2011, I had an amnio done as I was 36 going on 37 years of age. I don't think those blood tests were around yet. I remember being offered another type of blood test but it was far from picking up what an amnio would tell. My dr was not forceful with telling me what to do. He totally left the decision up to me and my husband. DH and I both felt an amnio was better for us. Not that we would abort a baby for downs but we just felt better of we knew what we were coming into if there was an issue with the baby which could be picked up by the best test out there at that time. I think I remember hearing that the risk was 1 in 400 pregnancies miscarrying did to an amnio. I was very nervous to get it done. I had a few if my friends calling me telling me I'm crazy and its painful to get it done (not that they had it done but their friends did and that's how they knew it was painful. So needless to say the day of my test I was very scared and nervous. I remember clearly the dr who performed the test coming in and looking at the huge tv which showed the ultrasound of DS and saying we can't put the needle on that side bc your anterior placenta is over there and DS was on the side where the test coukd be performed. Well his legs and feet were over there and each time the dr would try to get him to move over his feet would kick back at where he was pushing in my belly. Actually quite cute at the time. Anyway dr thought if have to go back another day bc of this but DS ended up moving over so I was ok to get the test done. I remember I was so nervous that I asked the dr to please walk me through each step as it was happening so I knew what to expect. He was planning on doing it anyway. I have to be honest i didn't even feel the dr stuck the needle in. It all happened so fast! I felt nothing! After all my friends putting fear into me about it I felt nothing which was awesome! I stayed off my feet the rest if the day per dr and thank god all turned out well. I walked out of that procedure a huge advocate for amnio's and told myself if I got pregnsnt again I'd do it with the next child too. Is it scary that a miscarriage can happen..absolutely. But the way I was informed about the risks were they weren't that high. Don't get me wrong I would have been devastated if something went wrong but I just had so much trust I can't explain it. I'm 39, almost 40 and if I were to get preggo now I wouldn't overlook an amnio. I'm curious to get my drs opinion in these newer tests but if he were to tell me it they don't reveal as much with the chromosome issues then I def would go forward with an amnio. I know I would be stressing a lot of a blood test came back with poor results and then had to get an amnio anyway. I'd be a nervous wreck in the waiting between blood test if it came back abnormal and then waiting for amnio results. I just wanted to share my story. I know not everyone had the outcome I've had. I know a few others who've had this test done and it turned out like mine did. Then I have friends who looked at me like I had 10 heads when I decided to get it done bc if the risks. It's truly a personal choice to do an invasive test or not.
Gt I hope the full amnio results come back good. You must have been so stressed after getting the test results back as abnormal and then having to go through an amnio anyway. Nobody needs the added stress like that when pregnant. Good luck to you with the rest of your pregnancy and hope you are feeling well.
Not many do materni and then vivas ice one because drs all push u don't need to.
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Statistically...amnio carries a .5% chance of miscarriage after testing. CVS carries up to a 1% chance of miscarriage after the procedure. Those are also controlled studies reports. Just because the test procedure was easy for you, doesn't mean it will be for someone else, much like how someone else wouldn't fall in that 1% of incorrect MaterniT21 results. Anecdotal evidence (ie: google searches of people who it produced a false negative/positive for) is not statistically relevant. It doesn't change the accuracy. Mostly because you can bet a very high percentage of people who recieved incorrect results (all those 1%ers) are talking negatively about the test online. While the 99%ers who were very pleased with their results are not participating in those conversations. It is very easy to find controlled study results online if you google the tests and sift through the message board stuff to look for actual medical papers. False negative rates are also published publicly.
I have no vested interest in advocating for the MaterniT21 or Harmony test, other than that I don't want someone to think that because they ran across a few people who had a bad experience with it and a good one with amnio means they will have the same results.
It really does suck that you had to fall into the 1% of people who were told your baby might have had an issue. But, im sure you realize, you also could have fallen into the combined 1.5% of people who lost their baby to CVS or amnio. And when comparing that apples to apples, you went through a few weeks of worry and stress, versus the irreversible, life altering alternative of losing a child to a diagnostic procedure.
I just don't want someone to look at this conversation and take away that the risks are equal, because they are not. I'm glad we all get the choice. And no one can really say what they would choose unless they were placed in that situation. I must have respect for the decisions you made, since I wasn't in the spot to have to think about what I would do. I am glad your little girl looks great and the amnio is likely to come back showing she is genetically in the clear. I must, however, respectfully disagree with your assessment of the tests when compared to one another.
GT I am just thankful that all has come back normal and you can go onto enjoy your pregnancy. :)
I promised a member who lost a healthy normal baby after a CVS test which had been done for no reason other than that she was over 35, that I would be vocal about the risks involved in that and so that's my intent here. Wishing you the very best and so so excited for you!
I don't think any of the blood tests are backed by uk official bodies, I do think the nhs is trailing the maternity21 as I think they are doing a clinical study as they want to bring it into nhs care.
Amino and cvs as far as I can see are the 100% options that do full genetic screening as well.
There's no easy answer unless you are 100% happy not knowing. With two disabled kids already I would want to be prepared as so far my kids have had a hard time just getting a decent standard of care. But that's the kind of thing you can never predict.
Part of my reason for doing PGD is to do genetic screening on the embryo as I have a child with a disability, and I am not super keen on the idea of invasive screening. However, in your situation GT I would have definitely followed up your harmony test with a cvs or amnio. I think the harmony and materniti21 tests and the like definitely have their place and are a good option for people who are seeking non invasive genetic screening, like my friend who is pregnant with her second child. Her first has Down syndrome, and the second was high risk based on the 12 week scan. She has no plans to terminate but wants to know in advance of delivery but doesn't want the risk of miscarriage.
However, personally I do feel like having both a cvs and amnio is an unnecessary risk and could have devastating consequences. But this is a totally personal call.
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I agree with everything everyone said. At the end of the day it's your call. I personally would risk a mc and know that my baby is ok, and others wouldn't be ok with that risk. Yes, cvs & amnio is risky without a doubt. I was 100% willing to take that step but I totally understand why people don't want to take the test. Materni21 as I stated is not FDA approved for triple X & it's wrong 10% not 1%. Anyway, good luck to you all and we are very excited to be having a baby girl. I did state that cvs and amnio for me was easy, but my dr was amazing at this procedure. If you do get it done go somewhere who is top of their field, a hospital etc not someone who is random, but someone who does a ton of these procedures!
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Just to further clarify because I still feel like there is confusion here, all that hotdogz and I are urging is that people have the non-invasive screening tests first and then if something comes up awry, of course have a CVS/amnio AT THAT POINT. The risks are then justified. No one is saying that GT should not have had whatever test she wanted to have to give her peace of mind and it's not our intent to secondguess her in any way (even tho I don't think having both CVS and amnio is medically indicated or a good idea either (and ETA in 2016, I think it was medical malpractice that her doctor agreed to do that and it appalls me), but just to offer recommendations for people who are newly pregnant and considering their options. GT's baby is healthy and normal and we are all thrilled about that.
To my personal way of thinking, with these tests available (and I don't care if they are 10% or 1% or anything in between or whether they are approved by the NHS or FDA or Consumer Reports or anyone else) then there is no legitimate reason not to do it that way. Have the safe test first and then if it comes back positive, have the more risky one but keep in mind that the blood tests are only a test and may not be accurate.
My personal opinion is that people shouldn't let the potential of a false positive, which to be sure is a stressful situation but in the end causes no real lasting harm, scare them into having an invasive test in lieu of the blood test. Both amnio and CVS can and HAVE caused real live people on this very site, to lose perfectly healthy babies.
There are no guarantees in this life and the unfortunate fact is that tons of things can and do go wrong in pregnancies, deliveries, and early infancy that are totally outside of chromosomal abnormalities and neural tube defects detected by CVS/amnio but have lifelong consequences that are in some cases worse than the things that can be detected. So to make a decision to have highly invasive tests in the belief that you will then have 100% guarantee of a healthy baby, it is an illusion.
Yes there's no garantees anywhere. I think I would go for the non invasive first only do the cvs / amino if if got bad results again. In the uk they do nt thickness and combined bloods which was really scary at 37 so pretty sure I have worse odds at a older age.
My sons both have dyspraxia and like most disabilitys, thats just the luck of the draw. It's just the stress of being told you have a high risk of a genetic condition and waiting and seeing for the next 28 weeks isn't some thing I will be doing again.
We are lucky we have both options now. Thanks for the view points.
NT test and bloodwork really isn't very reliable at all and lots of false positives with that. My doctor told me that NT and triple/quad screens are automatically positive once you're over 35 because that carries the most weight - even if everythign else is normal, if you are over 35 you automatically get a "high risk" positive on NT test/triple/quad screen. I am sorry that your doctors did not explain that to you and spare you 28 weeks of worry.
These new tests are different and much more reliable so the game has changed considerably.
I knew at the time my results went up purely on age, but they didn't give a breakdown of my nt risk, blood risk then my age risk. My risk was actually 1:345 but I had my nt scanned 25 times, then the sono said " you really must have a cvs" so I was sure he had seen something. Also I had only about five measurements max for my first two boys.
When it has taken you about two years to conceive its not what you want to hear
:( ugh I hate that you were put through all that!!!!
Atomic, I think we are in furious agreement!
And I completely agree with you that a clear CVS or amnio is not a guarantee of a healthy baby. Even if I had either of those tests, my son's disability would not have been picked up because it's a micro-deletion and they would have had to have been specifically looking for that, which they wouldn't have given there is no family history. Similarly, autism is not going to show up on genetic screening, nor vision or sight impairment. Having a child is a gamble, even if you do get the all clear, there are plenty of people that acquire disabilities in their lives. By all means have the screening if there is a valid risk, but be prepared for any eventuality.
The harmony test is NOT a diagnostic test, a lot of people seem to think that because it's a genetic test that it's conclusive, it isn't. It can be and has been wrong, deal with it. Even when the tests detect trisomies, it's not conclusive, followup tests are done to make the result conclusive... and in a small amount of cases, even some of the trisomies detected by harmony have been wrong.
We are in the same situation as some here, our harmony test came back as a girl (confirmed twice) and yet our baby has a penis. The medical establishment is trying to make sense of it and throwing possibilities around, like turners syndrome (these babies are girls and there's no record of them developing a penis in the womb, that I have found). These babies tend to be small, our baby is growing as expected, no heart issues either...
We believe that in small instances there is an anomaly in the harmony testing as more contradicting sonograms and births surface on the net. Some one is making a terrible lot of money professing accuracy rates when again... it is not a diagnostic test, it's inconclusive!! These companies need to be regulated cos they are causing a whole lot of unnecessary stress.
At this stage we are going with the sonographers and obs - scientists have also recently discovered that fetal dna can be found and stored in the mothers blood for years... we've had two daughters previously... really there's still much about nature that isn't known. So mums to be, if your results are incongruent to your sonogram and all else is measuring to routine? I recommend not to put your faith in the harmony test.
Will keep you posted with our journey.
Everything has a margin of error and there is also a human factor to be considered as in, test results could have been mixed up, etc.
I have seen gobs and gobs of inaccurate ultrasounds both for gender and also terrifying people into thinking that something was wrong with their baby that wasn't. I have also seen many false positives with the old school triple and quad screen tests. Even if the Harmony-type tests end up being less than 99% reliable, which they're new, they very well may, they are still better than the alternatives and unlike the CVS/amnio, are non-invasive.
I am sorry that you had a bad experience with Harmony and I will be following your story, snish.
Everyone else, I continue to urge that you have a Harmony-type test done instead of triple/quad screen, amnio, and CVS. And if your ultrasound tech seems to be saying one thing and Harmony another, the Harmony is probably correct.
Re fetal DNA, according to my research this matters not if you have had daughters and only daughters. They will not detect a Y chromosome that isn't there if you have never carried a son. I hope you keep us posted because we do want to hear of other experiences that are outside of the norm.
Again, I'm sorry you are having a bad experience but I simply have to reiterate that of the options available, as it sits now with the available information, Harmony-type tests are the best option. Non-invasive and much more reliable than the average person's ultrasound. (you have obviously have had some much more in depth ultrasounds than the average person does).
Now, all you ladies reading this who are clutching at straws and now hoping your Harmony gender result was wrong...or terrified that it was wrong...please be realistic and remember that ultrasounds are wrong all the time and Harmony-type tests are way more reliable. The odds are sky high that your Harmony result is totally correct.
Rereading this thread which was originally regarding a gal who had a false positive on the Harmony test and then went on to be absolutely overtreated for that, since she has moved on from the site let me speak a little more plainly, if any of you guys skip the blood tests and have CVS/amnio FIRST because "Harmony type tests may not be 1000% reliable" based on her experience or this new person, I'm gonna give you a stern talking to. Have the non-invasive tests first and then IF there is a problem you can have the risky ones.
And if anyone has a normal amnio and then is so worried they go back for a CVS, like happened earlier on in this thread with the previous poster, I'm gonna come to your house and thump ya. She never should have had that done, her doctor should never have agreed to it. We have had at least two people lose perfectly healthy babies after CVS/amnio that they had for no reason other than they were 35. Non-invasive FIRST, even if they are not perfect. THEN invasive tests if a problem is detected. Don't schedule a termination based on the results of the Harmony-type tests of course, yes, occasionally can be wrong. But don't have an invasive test that can make you lose your baby without first having the non-invasive one.
I am 37 and of " advanced maternal age" lol and I was with my last also and NO WAY would I get an amnio and risk my child's life for what could be. If you really have to know then non invasive tests first and then talk about others if its indicated. I wouldn't do it either way:)
Gt- glad your initial results look good and hope the rest put your mind at ease. You are very correct in that it is not a diagnostic tool and just a screening. I have real about false positives and women aborting and just skipping the CVS or amnio so kudos to you for seeking the truth. Def. Don't go off these results 100% if the come back positive for something. This happens with other tests and simple ultrasounds freaking women out who then go onto have healthy babes. In our search to find something wrong sometimes your gonna find it whether they are right or not:(
this is a pretty old thread, I just wanted to be more definitive than I could really be at the time regarding anyone having:
a) an amnio instead of a Harmony/Panorama type test "because it was so stressful to get a false positive" or "they are screening, not diagnostic" (seriously why does this even MATTER, call it a hedgehog test if you want to, it's irrelevant) and
b) no one should EVER have a CVS AND an amnio both for no effing reason. Have one or the other, not both.
I despise threads like this where one or two bad experiences then start making everyone question what is overall a BIG technological improvement. Nothing is perfect, but because something is imperfect that does not mean that everyone should go back to old and/or invasive tests that give tons of false positives and can possibly cause miscarriages.
I have also read about this and no doctor should ever abort based on Harmony/Panorama type test wihtout first having CVS or amnio. That any doctor would ever agree to such a thing is IMO malpractice.
Have non-invasive tests first. Then if it indicates a problem, or something seems amiss (like a peener on the ultrasound), have the invasive test THEN to verify or not. And if you need to have the invasive test done, PLEASE for the love of all that is good and holy, don't have both amnio AND CVS because you only need one.
Hi Everyone,
Update: At 24 week scan, our baby is growing as expected, great heart beat, every inch, measured and yep, the penis is growing too.
Experts are now proposing 3 options - that the harmony stuffed up cos it's got it wrong 4 times previously in our hospital, and our baby is a typical boy, the other is CAH, where baby has enlarged clitoris, the last is xo/xy mosaic.
We wont know until the birth because although they are keen to know and do an amnio, we are refusing. There is absolutely no way that we will risk our baby with an invasive procedure. Our next scan will be at 32 weeks.
Knowing sooner will not change the way we feel about our baby, so if there's an anomaly going on, we've decided to deal with it after the birthing.
More later.