nuchal fold scans

[allatsea]

Does anyone know how many weeks pregnant you must be before having a nuchal fold scan at Salisbury hospital? We had one with dd1 and am now 6 weeks pg with no.2. We had disappointing results first time round with a combined nuchal fold scan and blood test and opted for an amnio to find out for sure. Although everything was ok, it was a very traumatic time for all the family so we'd like to know the odds before we tell anyone that I'm expecting to avoid the daily deliberations

Oh, Rhea, hold on tight. This is going to be the hardest few weeks, and very difficult to share with anyone. No-one will be able to understand exactly how you are feeling, so if people know about your pregnancy, expect them to unwittingly say all the wrong things. (like this, probably!).
Really, really feeling for you.
Big Hugs,

Thinking of you.

Well here's an update...
ParvoVirus came back negative which I expected it to but nonetheless I was pretty upset.
I arranged for another scan to be performed yesterday to check if there was any edema on the baby's tummy (as found in the 1st nuchal scan). The consultant was fantastic and did a very detailed scan looking for any change in the cystic hygroma on the baby's neck, and he now thinks its just nuchal edema and its reduced to 4.5mm from 8mm - which is good news!
There are no other signs of other pockets of fluid in the abdomen or chest area (known as hydrops) so that's good too as these are usually fatal. The baby is developing normally, and its crown to rump length is now 81mm!
All good news...
So we now sit tight for the scan on 17th Nov when hopefully everything will be devloping along the same lines.
We have still got to wait for the full cultures to come back from the CVS test to see if there are any chromosome disorders, and we won't receive these back until 12th Nov.
Its just a huge waiting game. The consultant gave us odds of 50-70% chance that our baby will have a birth defect, but thats still means we have a 1 in 3 chance of everything being okay.

For anyone out there that is going through anything similar to this, I have found 2 organisations that have been fantastic - ARC and The Birth Defects Foundation. They have loads of information on their website and after emailing them for advice, both have phoned me back to talk through our situation. It really does help to get as much information as possible to help you prepare - well I think so anyway!

I also can't get it out of my head that the nuchal edema could easily disappear by the 20 week anomaly scan. If we hadn't had the 11 week nuchal scan, we would have had no idea that there was a potential problem. My husband and I are going through a rollercoaster of emotions each and every day and yesterday we talked at length about how we went in for a prenatal scan without thinking through the consequences of receiving an indication that something might be wrong. We just assumed that already having a wonderfu daughter things would probably be okay. This has been a huge wake-up call that when you embark on becoming pregnant you have a 2% chance that something will be wrong - and sometimes you will be included in that 2%.

Sorry to blab on, I find it helps!

Good luck to anyone else out there thats going through anything like this too - the waiting is unbearable, especially if there is bad news at the end of it. I just can't help thinking that sometimes a miracle happens - after all that's what every baby is - A TINY MIRACLE.

Talk to you again soon.

Rhea
x

Rhea
I have virtually the same story as you. I went to Kings for my nuchal scan at 13ish weeks and received a 1:2 chance of having a child with chromosomal abnormalities. The nuchal fold was 4.3mm but combined with my age (40), it came out very high risk. We elected to have the CVS with Prof Nicolides there and then and a few days later the results came back negative. I have since had 2 anomoly scans at 14+ weeks and 20 weeks and 2 cardiac scans. The nuchal fold had diminished like yours and they could find no apparent abnormalitie with the baby in any further scan. I am now back at my normal hospital (West Middx) and under an obstetrician and all they are doing now which is different from a normal pregnancy is that I have to have another scan (this week) to check the growth. I am now 28 weeks pregnant and as of last week when I saw the obsetrician, the baby is spot on size-wise for her dates. Kings were fantastic and the scans very detailed indeed. I have subsequently spoken to 2 other mums who have had high nuchal readings followed by normal scans (particularly cardiac) and then went on to have normal babies. I am very hopeful - fingers crossed. What I was told was that if you get through the 20 week anomoly scan and cardiac scan without any apparent problem, the you have a 90% chance of having a baby with no problems at the end of it. I know exactly what you are going through - it's an absolute nightmare waiting game. If you want to keep in touch, please feel free to email me on [email protected]. I wish you well - please keep us posted.
My baby is due 1st Feb 04.

Amandella xx

Thanks Amandella,
Your story is really encouraging, I'm so pleased everything has worked out well for you. It hearing from people like you that just encourage me further to be positive!
I have downloaded a lot of information from Prof Nicholades, as he seems to have published a lot of research on high nuchal translucencies.
Unfortunately our little baby falls into the most severe category, as the initial scan measured a NT of 8mm, way off the scale!
We have now received the full chromosome results back and there are no problems!
I can't believe I will be 15 weeks tomorrow, so we have another scan on Monday to check developments.
I am being looked after by Dr Lawrence Ipey at the John Radcliffe Hospital in Oxford, and he has been really supportive, always encouraging us, but also being honest with the risks.
I'm not feeling sick any more which also helps!
I'll post back when I have more news.

Rhea, Phew, pleased to hear the results of the chromosomal screening, but thinking of you as you approach Monday...I guess it's going to be hard to think of anything else over the weekend.
Step by step, day by day...
Hugs

Does anyone know EXACTLY which dates the nuchal fold is valid for? I have read 11weeks+3days to 13weeks+4 days... but then people talk about getting it at barely 11, or more than 15 weeks.
Is 13 weeks+6 days too late?
Is 11 weeks + 2 days too early?
Long story, but I'm afraid I won't get my dating scan in the right window, and am wondering if I should pay to get nuchal fold done privately, after all.

Hi -- I just phoned the Fetal Medicine Centre/Harris Birthright people, to answer my own questions!

Tel. Numb. 0207-486-0476.
Valid window for nuchal fold: 11wks+3 days to 13 wks+6 days. Outside this window, the stats for the nuchal fold thickness correlation with Down's are unknown.
Cost = £130, which includes a blood test for 2 markers, and the nasal bone indicator.
They try to schedule for when you expect to be 12wks+2days.
They prefer bookings at least 2 weeks in advance, but can usually fit in with shorter notice.
One chap said that he would act as a referree for the nuchal fold done locally... in other words, I could insist on the local hospital faxing the results to him for him to check over. Not sure if he'd charge for acting as referee, or if my local hospital would cooperate(!), but I thought it was a good way to make sure it was done properly.

Rhea, how are you doing? I hope things are going ok for you and your family.
Best wishes

Hi Linnett,
Things are going fine. We continue to be monitored and scanned, but will know much more at our 20 week scan, where we are also having a detailed cardiac scan as that's the next thing to rule out. It's booked for 23rd December - so it could mean a tough Xmas, but I feel really positive about everything, so refuse to think we will get any bad news!
The last scan (2 weeks ago) showed that the nuchal measurement has decreased again, and was much smaller in comparison to the baby's overall size. The baby is growing normally, heart, lungs, brain all look normal so fingers crossed nothing sinister is going to emerge.
Our dd is coming up for her 2nd birthday in 2 weeks time, which is helping us focus on how lucky we are. And Christmas too, lots of shopping to do, so that's keeping me busy.
How are you? Can you feel baby kicking yet? This little one is a right little wriggerler!
Anyway, that's all for now, of course I will let you all know how the scan goes. Until then, take care...

Rhea, glad to hear that things are going ok at the moment. I hope that you get the good news that you're hoping for at your second scan.

I had my amnio last week and got the results back the next day. They came back clear for Downs, Edwards, another one I can't remember the name of and they also got a rapid response on the Sex chromosomes and have ruled out Turners, so that has been a huge relief to us knowing that they have ruled all of those out. I get my 19 weeks Scan on the 19th of December when they will take a close look at the babies heart. But the Dr seems to think that it's ok but to be sure he will be there to have a really good look just to check.

We're also feeling a lot more positive and hope that we are able to give a happy announcement on Christmas day to all our family and friends, haven't told anyone yet as we want to know all the results before we mention the baby to anyone. I'm now 16 ½ weeks and haven't felt much movement yet but last night I did feel a small kick so it seems to be on the move at last.

I'll be keeping you in my thoughts and wish you all the best for the coming weeks.

If a large reading is found on a nuchal scan it can mean different things. A very large measurement is often related to Turner's syndrome, whilst a larger than normal but not that big reading may indicate DS.

A friend had an amnio following a very large nuchal measurement - the results showed an XY/XO mosaic- a mosaic is a case where some cells are normal and some are abnormal. It can happen in any chromosomal disorder so you could get a mosaic for DS. The picture then becomes very unclear. If all the abnormal cells are in the placenta (as happened in my friend's case) then the baby is totally "normal". If not then the baby will be affected, but not as severely as a non-mosaic. So for example may children with a mosaic form of DS may be very mildly affected. It makes the decisions very difficult.

The miscariage rate after cvs is higher than after amnio as it is done earlier- at a time when there are more spontaneous miscarriages. I did read that the number of m/c caused by each procedure was probaby about the same. They don't do cvs earlier as in the early days there were a few cases of babie's being born with hands missing after very early cvs.

I happily had scans during my 2 preganancies, but having seen friends enter some appalling times after dodgy scan reuslts (which then turned out to be fine- although they usually had to wait until birth to find out), and having seen the pressure women are out under to terminate for something like DS, and knowing what I know now about disability and what it means for a family, if I got pregnant again I think I would be very cautious about scans. In fact I was speaking to f friend last week who had had such a hideous time in both pregnancies due to scan results that she has decided she can't face pregnancy again. I know they're good, but I think the way any problems are dealt with needs to be reviewed.\

Agree that some sonographers can be bitches. I had a mc at 8 weeks and the sonographer a)broke the news "well there's no sign of anything alive here" and b) told me she thought it might be ectopic (it wasn't) left a lot to be desired. The sonograher who ran the EPU was great though (normally I would have seen her but she was on holiday so I got the witch instead).

I'm booked for the nuchal scan next Tuesday. Slightly worried by literature sent with appt. Says slight risk of m/c after scan. Never heard of this before. I thought it was same as ordinary scans and they always said they were safe. Can anyone shed any light?

Well, it is just the same as any other ultrasound scan, and I do not believe them to be associated with miscarriage. what exactly does your literature say?

At work so don't have it with me, but something along the lines of "Although the baby appears fine on the scan, there is a slight risk of miscarriage after. If you have any bleeding etc..................." Maybe they just mean there is the normal risk of miscarriage. Badly put if that is what they mean. Might ask when I go.........

I suspect that is what they mean... it does sound odd, though. The scan is exactly the same and I suspect they are just covering themselves legally.

Thanks for replying Aloha - thought it was just like norm scan, but this is my 1st nuchal despite it being my 3rd preg (getting on you know). Hubbie not too keen (good Catholic boy) but think I would need to know at the least.

lazyeye- are you sure it doesn't mention the m/c risk in relation to a cvs or amnio which you might go on to have if you had a dodgy scan result? I think the Kings literature mentioned that risk- but the scan itself doesn't increase the risk of m/c

Rhea: how are you doing?

Hi Blu,
I'm doing fine, 19 weeks tomorrow. Baby is wriggling and kicking all the time so I just can't think that's anything is wrong!

We have our anomoly and cardiac scan on 23rd December, so until that, I am merrily getting on with Christmas preparations, my dd's 2nd birthday is tomorrow, and I'm winding up work for the holiday period.

It seems such a long time ago that we got the bad news at the nuchal scan. I know how worried and upset I was, and to be honest I never thought I would get this far into the pregnancy, so I suppose I'm in denial, but its a nicer place to be than utterly devastated.

I keep checking into the discussion groups, just to see how everyone else is getting on. It was so nice to read Amandella's story (I secretly am hoping my pregnancy will follow the same path!) and I follow Linnets progress as we are pretty much due at the same time.

Anyway, thanks for checking up on me, its nice to know that you guys are still out there.

Keep your fingers crossed that on 24th December I will be able to post a message saying that everything went well and that this little baby girl inside me has been given the all clear.

XXX

fingers crossed here for a nice xmas presents

Lots of love rhea.

Rhea, how was scan on 23/12? I am at work on a very quiet 30th December and have been reading your thread since my nuchal is Friday. let us know.

Sorry for not posting earlier... its all good news!

Had the scan on 23rd and was as nervous as hell. My heart was pounding as the cardioligist explained what she would be looking for. Baby was behaving and in an excellent position and before we knew it she turned and said "everything is normal!"

After completing the anomaly scan (with a nuchal measurment of 5mm which is average for a 20 week baby) she told us that if this was the first time we had been scanned she would not suspect any problems! Everything looks normal, baby is a good size and together with the results from the CVS our chances of a normal healthy baby are massively increased.

Its hard to believe that we went through so much, although we still have an increased risk of some rare syndrome at birth, but nothing like the first indicators at the 11 week nuchal. The cardiologist then said "I give you permission to continue with a normal pregnancy and put all of this behind you!"

So we've had an amazing Christmas and New Year. I'm getting nicely fat and I'm now loving being pregnant. With every kick and wriggle, I place my hand on my tummy and smile! Last night my husband whispered with a tear in his eye "We're lucky aren't we". And we definitely are...

Good luck to all of you out there that might be going through what we went through, it's really tough but try to stay strong as sometimes the odds are just on your side.

Thanks for everyone's support, and for anyone who is thinking whether or not to go through with a nuchal scan, then my advice would still be yes. It's only an indicator of a potential problem, and it can be hard to remember that, but following all the extra scans and tests we know more about this little one than most, and it just brings you closer to your baby.

Good luck with all your pregnancies!

lol Rhea xxx