Can't see a nosebone! Long post, sorry!

[Har]

Hi everyone,

I posted in December as I had my combined blood and nuchal fold test and was given results that confused me (a 1:4800 risk from the nuchal translucency which then rose to 1:400 after my bloods! I'm in Sweden and no one at the clinic could explain the results to me, the midwife said she didn't understand the NUPP test and the sonographer just wasn't around after the ultrasound. All I was told was that I was still low risk so shouldn't worry).

Anyway, of course I worried! Talked to a family friend out here who's a gynae and she talked to some obst. friends who all thought given my age (27) it was quite high and that I should consider CVS. By this time (sorry, is everyone asleep yet? Meant this to be a quick intro to my question!) I was in England for Christmas and my old GP recommended The Fetal Medicine Centre. Lovely, wonderful, fabulous place! Was booked in for a CVS but they did a new NUPP ultrasound and bloods first just to check... my result came out as 1:4087 . Was absolutely thrilled (though the blood risk was still high - 1:733 - compared to the rest) and decided not to have the CVS.

Now, finally, to my point! The sonographer was unhappy about the nose bone, saying she couldn't see it strongly enough. She said it was hypoplastic. She said I should't worry but I should check it very carefully at 20 weeks.

And again, I'm worrying. Has anyone else been told around this time (I was 13+5) that the nose bone wasn't visible and then seen it clearly at the 20 wk scan? And even better, had a healthy baby born who has a solid nose bone!

I would be pretty calm if I was going back to the same place but I will be having the next ultrasound in a couple of weeks here in Sweden and I've really lost confidence in the clinic and also the ultrasound equipment (partic as at my 12 week scan the sonographer out here was very sure about a nose bone).

So sorry about the epic posting and thanks in advance for any advice.

Har x

No advice - just wanted to bump this for you. There have been a few discussions concerning the issues you are dealing with on here lately. Try doing a search for 'nasal bone' in the pregnancy topic, it might turn up some info you can look at. In the meantime I hope someone will be along soon for you.

Thanks very much Franke! I'll go and search now.

I don't know if you already know this, but a missing or shortened nasal bone can be (note: "can be", not "is") an indicator of Downs Syndrome. However, only an invasive test like a CVS or an amniocentesis can determine if the baby has this or not.

I can't remember the exact dates, but CVS and amnio can only be done at certain times, so that is something to consider if you wanted to have the diagnostic tests.

Thanks very much Nonickname. I decided not to do the CVS as my risk had changed from 1:420 in Sweden to 1:4087 when I did it in the UK. I then found it hard to justify doing a test that could result in miscarriage when the risk for Downs was so low. I'm regretting it now as I'm worrying so much about the damn nosebone even though the risk was nice and low. I would love to go back to the UK for my 20 week scan as Professor Nicolaides at the Fetal Medicine Centre is someone I feel I could (almost!) relax with if needing to do an amnio. If their equipment showed a nose bone then I would finally be calm, and I trust them to know. I don't trust the people out here anymore even if they say there's a visible one. I really don't want to spend my whole pregnancy worrrying like this (even though it seems most people do!)

I'm having my next scan here in a couple of weeks when I'll be 19 wks, if something shows up there's still time for an amnio after that, isn't there? I thought the latest was 22/24? Am I wrong?

Sorry, not sure when you can have an amnio up until. I was seen by Nicolaides' team at King's too for my CVS. I too was worried about the risk of miscarriage, and the test was awful as they put the needle into the muscle first off as I had a very thin placenta. I had to sit extremely still through excruciating pain until they got ti in the right place, but it worked out OK for me in the end.

Good luck to you in whatever you decide.

Have just checked and according to Babycentre, "Amniocentesis is usually performed between the 15th and 18th weeks of pregnancy. However, it can be performed as early the 12th week or as late as the 20th."

Do you want an amnio to know for sure as you would keep the baby regardless of any problems and can prepare?

I very nearly had an Amnio even though my combined Nuchal was 1:1897 as I will be 39 when DD1 is born but at the 12 week and now again at the 19week scan they checked the nasal bone and the heart as DS babies usually have no nasal bone at all at 12 weeks and heart problems - so keep an eye out for the heart as well and Good Luck.

No direct experience of this, but remember that all these tests have margins of error, often quite large ones. The fact that they are not all agreeing with each other suggests they're not all that accurate. Ultrasounds can be hard to read accurately, even by professionals. And all the risks you have been given are still really pretty low odds.

I was given a "high" (still actually not that high though, 1:181) risk of Down's for DS, and I refused an amnio and chose instead to read up on Down's and prepare myself. I didn't want to have an amnio because of the possible risk to the pregnancy. You should do what feels right for you, but i just want to say if you don't want an amnio, I think that's reasonable.

Hi, just want to point out that most places don't use the nasal bone as an indicator. The reason behind this is very limited research has been done about it, and most of it by one dr and his team- yup, Prof Nicolaides. I work in a local hospital, not a specialist centre, and we DO NOT use nasal bone as an indicator at any stage,so I would not be surprised if other places, eg in Sweden they would not look at this.
As you have had some testing at the FMC, with this anxiety raised can you go back there for your anat check? That's probably the only sure way of alleviating or consolidating that particular anxiety. However, the anatomy check, whereever its done will check the structure of baby for structural problems that are known to be an issue- from brain structure to checking limbs, looking at babies heart- lots of things. The nasal bone presence/absence comes under the realm of soft markers- it doesn't mean anything on its own, but in conjuction with other soft markers can lead the drs to offer you invasive testing- which you've already decided againt. If you could have a scan that would tell you if the nasal bone isn't visible- what would you do then? Would it make a difference in our outlook for the rest of your pregnancy? Or decision about the amnio? Amnios can be done throughout pregnancy, but I think the risks can change.
Got to go, husband hassling. Sorry, probably raised more questions but if I can clarify anything please post again,
mumof k

Hi , i was diagnosed as " maybe being High risk to DS" due to an unseen nasal bone ( in 2002 with DS1) - This as my first pg and totally unexpected this news, my risk was good but the guy that was scanning me had come from Kings and was on 'day study' so i was a bit of a guinea pig if you like, Went to King the next day and Nicolaides team saw me there , he scanned me and also confirmed this so i went ahead and had a CVS done ( this was performed by him) - Outcome was that ds didn't have DS but had to go back for scans at
13 weeks _ No nasal bone seen
16 weeks - no real shape seen but something there
19 weeks - what was the problem - You could clearly see the nose -
Ds has perfect button nose!!

Good Luck ( sorry if i have rambled!)

Hi, as the above poster said, the nasal bone thing is really only done by nicolaides and co. When I had my first scan at the local unit I think they had been reading up on nuchal folds/nasal bones etc but without any formal training on it. So she saw something she found worrying - scared the life out of me and dh, offered us counseling and sent us of to Kings College. Where they were quite happy with what they found. What a brilliant team!! Because we were referred there for the 12 week scan we were invited back for 20 week scan (they like to see people throughout for they're training records I think) so back we went and were fortunate enough to get the professor himself. I really wouldn't trust anyone but him and his team to do the 'soft marker' tests as they are so new. The upshot is just as they predicted baby was fine. She's now 2.5 and as healthy and happy as can be. See if you can be referred back to Kings for your 20 week if you need reassurance.

Thank you so, so much to everyone who's answered. I really appreciate your time and help.

Mumofk - at my 12 week scan in Sweden the sonographer made quite a big thing of having seen the nose bone so I had no idea it was a more specialist thing, maybe the sonographer just saw a nose and was happy with that? When I had my ultrasound at the FMC I thought the dr said that the nose bone wasn't clear/ strong enough, but looking at my papers it says hypoplastic and that means not visible/ not existing (I think). She did want me to check carefully at 20 weeks but she didn't say there was a need for an amnio so I am presuming there were no other soft markers (thanks for all explanations by the way!) She certainly seemed happy with everything else. What do you think?
I haven't decided against an amnio, it was that at the time with the risk so low it didn't seem worth it, but the more time that passes and the more I learn about nose bones the more I'm thinking I should have done it. To be honest I really don't know what I'd do with the results, before I got pregnant I would have said, horrible choice but if a postive result for Downs came up then I would have an abortion. Now, at nearly 17 weeks I feel completely differently. I guess I'd have to think long and hard if I got a positive result, at the moment though I just feel I want to know for certain either way.
I would love to go back for the scan, the timing is tricky though for me to travel over and my (Swedish) husband thinks I'm being silly and that the equipment here is good enough. He doesn't really understand that once the worry has been planted it's impossible to get rid of. Even if the sonographer here sees a nose bone (which I now understand from everyone's postings isn't the simple thing I thought it was) I won't be completely happy as I want the same team/ same equipment (of the FMC that didn't see it) to tell me it's there.

Pinkranger - thanks for your very cheering post! Lovely to hear about your ds's cute button nose! I'm a little unsure why if the FMC team are specialists at 'finding' nose bones that my doctor wasn't more certain either way and didn't recommend that I have a CVS then and there (which I was all geared up for).

Chsisnow - thank you for your happy post too! Wonderful to hear that your baby is happy and well. It's nice to hear you wouldn't trust anyone else, as I 'discussed' this with my husband last night I felt I sounded unreasonable and patriotic and all the rest, he thought I was just saying how brilliant London is which I really really wasn't (though I think it is!) just trying to explain to him quite how good and advanced Professor Nicolaides and his team are.

Oh, ok that makes it all a little clearer. It sounds like your in the position of who do you want to believe. One place has seen a thing, the other place hasn't seen a thing (ok its a nasal bone but really it could be anything). This has raised doubts in your mind about the competence of the first place.
Even with the findings at FMC, they weren't suggesting you need invasive tests either, so they are reasonable sure you aren't in a higher risk group.
In my opinion, the competence issue and Downs issue are two seperate things. If you feel you really NEED to know about Down's, no scan can tell you- that's going to be an amnio.TBH, I don't know if you can go to a dr and request one, private or not, but if that's what you need to do for peace of mind you've got to try.
With the competence thing, you are in a pickle about the 20 week scan- BTW can be done any time between 18-24 weeks (different places will have different date ranges), but if I'm doing it the earlier you come the more likely you are to need to come back for a 2nd visit- the earlier ones all curl up in a ball (for me, anyway!) so can be harder to see everything. Anyway, if you've lost confidence in the first place, would you really be happy going back there- i.e. would there be any point to the scan as would you believe them if they found a problem/said everything is ok? If you went to another place in Sweden would you have more faith in them?
Hypoplastic technically means underdeveloped. I don't know if the FMC use the term to mean absent (I wouldn't have thought so) or just small/harder to see. WOuld ringing them up clarify that one? If there is a nasal bone there, but smaller/harder to see than expected, in FMC opinion, then both places would have been correct- maybe in Sweden the sonographer was using different criteria (like just looking to see if its there or not, rather than shades of grey in between??). I keep being reassured that FMC didn't recommend an amnio.
Hmmm, trying to think of more angles to look at this from but will have to stop for now.
Hope some of this waffling helps!
mumofk