Help! Baby too big for nuchal scan and now panicking

[OldDurannie]

First time posting here and in need of hand-holding! I found out I was pregnant with my first baby at the age of 37 in May. I informed my doctor and the local hospital (UCH) sent me a booking in date of July 8th and first scan for last week. At my age the risk of Downs is 1/250.

Booking in was fine but I went for my first scan last Friday and they were ?off? with me, demanding to know why I?d left it so late ? too late in fact for the nuchal scan. I explained that I?d taken the first scan date offered. Anyway at 15+5 I?ve got a foetus 11.8cm long, so it?s way too late and too big to do the nuchal scan. They?ve now done an additional blood test, but couldn?t say when I?d get the results, or in what form (over the phone, by letter). I eventually got a grudging ?maybe a letter in a couple of weeks? and I left feeling a bit like a scolded child. I assume that this is the standard blood test which is normally combined with the nuchal after which they?ll give me a statistical risk of DS, so I?ll get a single result not a combined which is OK.

Does anyone know whether a letter is standard and what form it will take?

I feel like a complete numpty. I?d read up on the scan and it did say that up to 14 weeks is standard but had I known 14 weeks was the absolute cut-off I would have asked for the date to be brought forward. I thought the scan was a bit late but assumed the hospital knew what it was doing as I was pretty precise about the conception dates. I?m now completely stressed out about this, even thought rationally I know the statistics are still on my side. To make matters worse I?ve got a work colleague who is at exactly the same stage in pregnancy as me and similar in age, had the scan at the right time. She?s now been given a risk of 1/2300 so is over the moon. I can?t see the midwife based at my GPs until the end of next week, so I?ve got no one professional to talk to about this.

To worry me further I?ve now been given a second (abnormalities) scan date for Sept 22nd ? when I?ll be 21+5. Do I need to ask them to bring this forward to 20 weeks which is again the standard? I don?t want to make another mistake, as I?ll be left a gibbering wreck.

Any advice appreciated.

[thejaffacakesareonme]

When I had my first and second kids I wasn't offered a nuchal scan. THey took blood and gave the odds based on blood tests alone. Is it possible they could do this for you?

Personally I would phone up your midwife and complain about the person who gave you the wrong scan dates and double check that your dates for the next scan are right. If they aren't she'll be able to do something about it on your behalf.

[Sandra2011]

I was 39 when I had my first baby and now 41 I'm pregnant again.

I just had my private NT scan yesterday at 11+5.

It's not all about your age. It's also about your ethnic origin, bloods, weight, are you a smoker etc.

I currently have the same risk for Downs as a 25 year old.

Try to find some private clinic around where you live and ask them if it's still possible to do for you.

[Bumpsadaisie]

Dont panic. You can still have the blood test - we didn't bother paying privately for the nuchal with DD1 - just had the blood test at 16 weeks. My risk there was 1 in 2700 or something - I was 35. I got a letter through the post, but all GPs do it differently so why not ask them how they will tell you the results?

We did have the nuchal this time around (second DC and therefore felt more was at stake if it turned out we did have a Downs baby, because of impact on DDs life to consider as well as ours) and my risk was 1 in 5375 - I am 37 tomorrow.

You could try bringing the 20 weeks scan forward to 20 weeks but not sure you will really gain anything by doing that apart from getting it over with sooner - it isn't dependent on the size of baby in the same way that the nuchal fold scan is. TBH our reason for having the nuchal was to find out any problem as early as possible and therefore, if we decided to end the pregnancy, to do it as soon as possible (the cut off for surgical termination is roundabout 14 or 15 weeks I believe). If in the hugely unlikely event there is a serious problem at 20/21 weeks I believe your options in relation to termination will be the same and not affected by a week or so either side.

It is stressful being pregnant, esp if its your first, but try to remember that the chances are everything is absolutely fine. The vast majority of babies are healthy. Try to relax and enjoy it (hard I know!). Best of luck!

[Bumpsadaisie]

PS you shouldnt feel bad or like you have made a mistake - you've been treated appallingly! You took the first date offered and they can't expect us to magically know that the date they suggest is actually too late for the procedure they are proposing! They are the ones who made the mistake.

[pootlebug]

There isn't so much of a window of opportunity for the 20 week scan - anywhere from 18-22 weeks is normal, so I think the date you have for that should be fine.

They will do the blood test for Downs Screening (some PCTs only offer this anyway, and don't routinely do nuchal screening). That will still give you a risk factor.

I'd be complaining though - it's not your fault you were given the wrong scan date.

[OldDurannie]

Thanks everyone for your replies. I've been sitting at my desk in work nearly in tears. It's my first baby, it wasn't expected as I have severe PCOS, it's all pretty alien to me, and I'm terribly hormonal!

I'll make contact with the midwife and see if she can chat on the phone ahead of my appointment for extra reassurance and I will raise the issue of the late scans. Having done some internet research it looks like they did the quadruple blood test for DS. The blood test results from my booking-in appointment were posted through after a couple of weeks, so I assume this will be the same.

Thanks all once again - you have no idea how much better I feel having expressed my worries out loud and had your kind responses.

[hawthers]

just a little note re your next scan - they do them at 22 weeks as standard where i live and definitely not any earlier.

hope all goes well with the blood test x

[carpetlover]

You can still have the quadruple blood test at 16wks. It's not as accurate as the nuchal scan but it's what everyone had until recently. I had to pay privately for both my 1st and my 3rd because both times my scan date put me at 15+wks which I knew was obviously too late for a nuchal scan. The hospitals (different each time) were very defensive and just said, 'tough' and wouldn't bring it forward so we had to pay.

Just to add, if you can afford to pay, you could still look into a private scan. Whilst it will be too late to check the nuchal fold, they can still check for the other indicators such as how the blood flows through the heart and how the nasal bone is forming. Both of these are usually combined with the NF measurement to give an overall risk and if everything was fine with those it may just help to ease any anxiety.

[WipsGlitter]

Just have to say, these tests only give you a risk not a definative "your baby has/does not have" downs syndrome. Only a cvs or amnio can do that. The nuchal isn't offered where I live as it is considered unreliable.

[Jamiesmagictorch]

Just to say I did have an early enough appointment for the nuchal but due to baby position they could not get an accurate reading. They then gave me another appointment and the baby was still not playing! I ended up with the old style blood tests I had with first DC and received a letter about 2 weeks later confirming low risk. So you may have ended up with the bloods anyway as this is not uncommon and the monographer I had did not seem too impressed with the accuracy of the nuchal. Try not too worry.

[Pastabee]

I'm sorry they were so rotten to you. I can understand why you are upset

Just wanted to answer your letter query. It will depend on area. Where I live they don't send letters at all. You get a phone call if anything is amiss with bloods / downs test and if everything is ok they just send a print out to community midwife who goes through it and puts it in your handheld notes.

You could ring ante natal secretaries at hospital who will know what happens in your area and at least then you'll know whether to keep an eye out for a letter or not.

[carpetlover]

Wipsglitter, are you in the UK? I ask because all trusts are supposed to be offering nuchal scans now. I've never heard of them being called unreliable before-not when done properly ie nuchal fold measurement+nasal bone check+heart blood flow+bloods. I believe this gives about 80% detection rate. So no, not 100%, but then as you say, they are a screening test rather than a diagnostic one. But of course, the diagnostic ones carry a small risk of miscarriage so every woman has to weigh up those odds.

Just to add, many nhs sonographers will just check the NF rather than all the other tests as recommended by the FMC. This isn't really good enough and obviously lowers the detection rate.

[theidsalright]

NT tests still not offered where I live (in the UK)

[WipsGlitter]

Yes in the UK, but Northern Ireland. It is my understanding that the skill of the radiographer is key to accuracy. I've a friend who had all the tests and was still the 1 in whatever risk.

[carpetlover]

Yes, I would agree that the skill of the sonographer is important which is why I had mine done at the fetal medical centre. They basically told me that although they had to give me a 1:5000 risk, that they were almost certain it wasn't DS. But then I also found their equipment to be so much better than that at the disposal of the nhs sonographer doing my 20wk scan.

[Sandra2011]

NHS offers NT scan only over 40's.

In Scandinavia this is a standard test for all moms, no matter what is your age.

[carpetlover]

Sandra, your authority is not following guidelines if only offering nt scans to those over 40. I'll try and find a link but all health trusts should be doing them as standard now- and many/most are but whether the sonographer gas had thorough, detailed training in the procedure is a different matter. It really needs to be offered in conjunction with the bloods taken at the same time to get the most accurate risk. Many hospitals still don't do the bloods or check the nasal bone or blood flow.

[Sandra2011]

Maybe this is postcode lottery again.

I was offered NT scan by NHS now at 41 but as mentioned earlier it's not as good as private.
In private they check nasal bone, heart, how blood flows etc. And to be honest I rather pay £180 for the peace of mind it offers.
Doctor spends 45mins explaining all the little details.

I had the same in my last pregnancy and it was worth it. When I had my 20wk scan at NHS it was just 10 minutes. Lady didn't speak to us at all, just at the end she said all looks good. My husband and I just looked at each other.. Is that all?

[brettgirl2]

I chose not to have Nuchal. It only picks up 75% of cases anyway (some private higher but still not perfect). It's far more likely to give you a false positive and worry you half to death than it is to correctly pick up downs (as there is a false positive rate of 5% of all pregnancies). It is only reassuring if you are one of the majority who it lowers the risk for. Try and relax and enjoy your pregnancy.

[rubybambini]

Hello - I missed the nuchal test too, as I didn't know I was pregnant for three months (another story). My first scan dated the pregnancy to 14+6!

I had the quad test. It was awful waiting for the result, not least because I was just coming round to the idea of being pregnant (PCOS too, and kidney disease), but wondering what on earth to do if the result was 'bad'.

I'm 39, and the result was 1:25,000 (yes, 25,000) - so I would really wait to see before worrying about the 1:250 statistic you quote. I got a letter about two weeks later, but was told the hospital would call if anything dramatic showed up.

DD is fine and dandy, and asleep with mouth wide open on my non-typing arm!

[OldDurannie]

To update: I contacted the hospital and checked that the second scan was intended to be a 20 week one (it was), and then brought the date forward to 20+4.

I also emailed the Head of Antenatal Service detailing all my woes about the missed scan, the attitude of the sonographer, and the lack of information about the blood test results. He phoned me within half an hour and was incredibly sympathetic and helpful. Hurrah!

It appears my GP practice sent through the wrong estimated birth date (late Feb not late Jan), so the scan was booked in too late and this wasn't picked up at the booking-in appointment. Mistakes happen, and there's nothing that can be done about it now, and I understand where things went wrong.

With regard to the sonographer's bedside manner I stressed that I didn't want to make a formal complaint as they can haunt careers for years, but that her attitude was upsetting at an anxious time. They will raise it as feedback, and the man did comment that sonographers are often technically very strong, but sometimes lack people skills. You don't say! She was a locum and not part of their usual team and she won't be dealing with me again.

The quad test blood results aren't processed and up on the hospital computer system yet, but he will make sure that one of his team monitors it and rings me when they are through. If I haven't heard by Tues, I'll contact him again.

So I feel a lot better than I did a few days ago. The Antenatal Services man was great, but a lot is down to the advice and support I had from you ladies here, so a heartfelt thank you once again.

[herethereandeverywhere]

Couple of facts to try to make you feel better:

1. Friend recently had nuchal test and was told her measurements were so bad they were "off the scale" and blood results brought it back to 1 on 2 chance. She went on to have CVS and a 4 hour scan at 20 weeks. They have found NOTHING wrong, so it's not the magic answer we all believe.
   
   2)Another friend came back as "high risk" of Downs after the 12 week scan but didn't want to have CVS/amnio due to risk of miscarriage. They had a private scan which looked at the nasal bone and other physical characteristics in more detail. They were able to be reassured by those results and the baby was fine. If you are still anxious could you raise a couple of hundred quid to have a private scan? If so I would look for one who specialises in checking for birth defects without CVS/amnio.
   
   I'm sure you and baby are absolutely fine. I hope you manage to get over this asnd enjoy the rest of your pregnancy. It's such a precious gift.

[OldDurannie]

Final update I hope. Just had a call from the hospital to say that the blood test results are back and I'm low risk - 1/26000 chance of Downs Syndrome. It was going to be put in a letter anayway but the Head of Antenatal services had arranged for a phone call to put my mind at rest as soon as the results were through. Phew! Huge relief.