Nuchal Fold

[janski31]

Hi can anyone offer me some pearls of wisdom I had my dating scan just over a week ago i was 12+3. The sonographer looked at me and said "it looks a bit thick" talking about the babies neck he then gave me a measurement of 4.6mm. Me and my boyfriend was then told to wait in a room for over an hour because the midwife had to come and speak to us when she did she said "am really sorry to be meeting you under these circumstances" trying to make out this was the worst news ever she then said I had a one in 14 chance of baby having downs or edwards syndrome. the next day we paid for a private nuchal fold scan with blood tests this time sonographer was very thorough baby has a nasal bone healthy tricuspid doppler and is very active measured its head correct size her measurement was 3.2 combined with my bloods odds have come down to 1:1128 and 1:3444 for edwards. me and boyfriend only went for private scan as the sonographer at the nhs filled us with no confidence. we dont want the amino or cvs as we will love our baby no matter what plus we had a mmc in January so we don't want to take that risk have another scan booked for 16 weeks to check babie again has anyone else had a similar experiance? Thanks x

Hi Janski31

Congratulations on your pregnancy

I'm appalled at how you were treated and told that they were sorry to meet you under such circumstances etc. Ugggggghhhhhhhhh it's so disheartening and depressing that such people are walking around our hospitals.

I have an 8 year old daughter with Down's syndrome. I was 30 when I had her and have since had another 2 girls who do not have Down's syndrome. All 3 girls and as delightful and equally as hard work as the others.

If there is anything I can do in terms of answering questions with regard to Down's syndrome I'd be delighted to try and help.

Did NHS do blood test? If blood test comes with low risk, it will lower the chances of Downs, too.

Ah bless you thank you so much.

I bet your girls are all gorgeous and keep you busy!!!

Did you have a high nuchal fold reading as well?

All I want is for my baby to be here in December happy and healthy whatever that means. Only reason why I am scared for my 16 weeks scan is in case they tell me something is so wrong that he/she won't survive.

And yes I agree my experiance the other day with the hospital was awful!
x

No they haven't offered me a blood test, should they have?x

They should mesure the neck and do a blood test. Your result should be a combination of both tests.

I just cannot believe that the hospital treated you that way.

My nuchal with DD1 was low and she turned out to have Down's syndrome.

My nuchal with DD2 was high and she turned out to not have DS.

Didn't even take any notice of what they told me with DD3!

My first 2 are December babies too. Busy time of year

All mums-to-be have the same fears but a high nuchal fold doesn't mean you have more reasons to worry.

Lots a love and hope you really enjoy the rest of your pregnancy, an easy birth and a wonderful son or daughter who will bring you so much joy xx

Hi Janski,

I was told at my 12wk scan, after a nuchal measurement of 2.5mm and blood tests (the blood test is part of the "combined test" for downs screening) that we had a 1:65 risk of Downs. We decided against any further screeening.

I'm really sorry to hear about the experience you had, they dont sound very sympathetic, or subtle!

Sorry I should add that I am now 16weeks!

Janski - Congrats on your pregnancy

Come and join us on the December 2010 antenatal club, everyone has been very helpful with all the questions i've asked.

I would go with your private scan results. Other comments are correct that you should of had bloods taken as well by the NHS. I would call your midwife and ask for a bit more information.

Good luck with everything!

Your right Saartjie the more I think about it the more mad I get.

I think this particular hospital are only capable of dealing with a "normal scan" what ever that means! My friend recently had a beautiful baby boy she was told all was normal on both her scans anyway when he was born his feet and hands hadn't formed properly so he was whipped off by about 10 doctors can't imagine what she went through not knowing if he was gonna be ok, he is fine has to have some ops but apart from that he is a right cheeky chappie!

It makes me wonder do they know what they are talking about!?!?x

Oh my god I so wish I had come on here last week you are all so lovely and have made me feel tonnes better!!!

Laviabella I will def come and join the dec 10 antenatal club thanks for your comment x

AbiAbi have you had a 16 weeks scan also?x

Thomcat you just sound brill!! I bet your the best mummy thanks so much for writing back to me x

It's so lovely to be on a thread with level headed calm women who have such positive attitudes. It's unbelievably sad as a mum to a child with DS to read about how 'scary' the prospect of having a child with Down's syndrome is. Living on the other side of the fence it all seems very odd that anyone could ever think having a child with Down's is scary! I get what they mean but now I'm living that life it's virtually impossible to see what is so "scary"!

Many medical advances are wonderful and mindblowingly amazing and we're very lucky. However the whole testing process is one I very much struggle with. Testing for things that are not compatible with life - yes. Testing and then offering condolences and seeming to steer parents towards a termination for something like Down's - noooo.

The way I was treated when I had my first child who happens to have Down's was as though the worst thing in the world had happened to me. I remember thinking at the time 'what's wrong with everyone, I've just given birth to a beautiful baby girl, why are they all so solemn and taking so negatively?'

I should actually take my main stream educated, reading, street dancing, happy, hugely talkative, very funny, charming beautiful daughter back there and and say 'look, this is why I wasn't sad, isn't she fab, now can you bear her in mind, and others like her next time you talk to parents to be, or the new parents of a child with Down's syndrome please'!

Hello Janski. I think many people have had less than satisfactory experiences with one aspect of maternal care or another.

I remember going for the 20 week scan, which began with a student ultrasonographer. I didn't mind as he needed the practice, and he was absolutely lovely and caring. Then the supervising doctor took over who was grumpy, and didn't introduce himself. "There are his hands and feet" was the most I got about how our ds was developing. When he got to the head, the brain looked the size of a peanut in an ocean. I asked him if it looked alright and he wouldn't answer, even when I repeated the question slightly louder. I left clutching a report which said that he couldn't get good views because I was too fat . He couldn't even tell me to my face!

I was worried, embarrassed and little angry, and sought out a consultant opinion a few days later. Needless to say using the same machine she got fantastic views and told me that everything was just fine, and that my layer of insulation was not influencing her measurements.

It is a shame that sometimes we have to go and get a second opinion (at a price) because someone could have done their job better.

Best of luck with the pregnancy and the birth.

Hi I had a measurement of 4.6 too but had the blood test taken immediatley and I cannot fault the nhs hospital at all they were very good and dealt with us compassionatly. I was in total shock as this is my 4th pregnancy im only 28 and really didnt expect it.
We decided to go ahead with an early amnio and it all came back clear.
We were referred to a consultant for a more indepth scan at 20 weeks to check the heart as an enlarged nuchal can sometimes indicate heart problems but that was also clear. The only thing that has come up is a single cord umbilical artery which could indicate prem baby a low birth weight however Ive had 2 further growth scans and she is showing at over 7lbs and Im only 34 weeks so no worry there. - should app the nuchal measurement was nothing to do with the cord.
Im really sorry with how you were dealt with I guess we were really luck with the ladies dealing with us.

Congratulations on your pregnanacy I hope everything goes well.

Thank you so much again to all you ladies who have replied with your kind words I hope your all your well in your pregnancys and your taking good care of your selves.

I also forgot to mention that after my scan last Tuesday I started bleeding on the thursday I was terrified! Went to doc he said I had to wait 6 days before they could fit me in for a scan!!! I rang the private sonographer she told me to come in next morning turns out baby was fine and it was a burst blood vessel which is quite common I just had to rest no more bleeding since (fingers crossed) could you imagine if I had to wait 6 days to be scanned I would of been a nervous wreck! Private sonographer wouldn't take any money off me she was glad of have been able to reassure me.

By the way I am 31 nearly 32 this is my first baby, cant wait for December!!!!x

For anyone wondering about a CVS, which is something I had following a high nuchal fold reading and a 1 in 8 chance of Downs, all I would say is that the actual procedure is fine. I just felt slightly achy afterwards, but not for long.

Whether you choose to have it is a different issue, but all I would say that if you ask the consultant who carries out the CSV what the rates of miscarriage are in that particular hospital, they are obliged to give you the stats. That can help if you are deciding whether or not to have it based on concerns over miscarriage.

Thanks emma what was your nuchal fold measurement?x

Janski- yes we had a 16wk scan for other reasons, but none of the soft markers for Downs were immediately obvious- babies nose was very visible, heart action good, fingers and toes present and brain looked good; so it was very reassuring, although to be honest just a heartbeat is always enough for me, IYKWIN.

In general though what I have really learned from this is be VERY careful what screening tests I have in future, as this has caused a fair amount of heartache that I could have done without

Feeling positive now though, and really have relaxed into my pregnancy finally!

Ah good on you! Hope you have a really happy and healthy pregnancy.... could they tell you the sex of the baby?x

You can get a 16 week blood test as the scan at that time the scan can be unreliable as many above have pointed out. Many of these test are as AbiAbi says. My MIL was told for all 3 of her children that they had spinabiffada and she should abort but she knew she would love them no matter what and when they were born all were perfectly healthy. This is why we decided not to push for the nuchal scan.
I hate it that hospitals treat people like that and just assume you wouldn't want your baby if it not clinically perfect. The love and joy and work from a child is enough and while I respect a parents right to not go full term my Uncle has Downs syndrome and is possibly the happiest person in our family at a good age of 54 years old.
Congratulations on your pregnancy and good luck with it

They think probably a girl !! They couldn't be 100% as it's so early, and I felt really cheeky asking so early on, but it did make me feel a lot more relaxed and bonded with the baby, if that makes sense!

Hi AbiAbi

Totally know what you mean about the bonding thing, ah a little girl congratulations! My boyf really wants a little girl think he thinks it will be like a mini me bossing him about all the time ha ha. Seriously though we aren't bothered either way as long as its healthy and happy x

I really didnt mind either; but finding out a sex (or even just a possible sex given how early it is!) really helped me connect with the pregnancy and stop thinking "potential problems" and start thinking "future DD / DS no matter what"!

I too have just had my 12 week scan on Monday and they gave us a Nuchal measurement of 5mm. I really had no idea how to guage this, but then when we spoke to the midwife my world seemed to turn upside down as she painted a very grim picture for us. They said that they wouldn't even bother taking the blood tests as i am in a way too high category and have referred me to another Hospital for a further scan and CVS - this I am having tomorrow. To say I am worried, petrified, devastated and confused is an understatement. Its great to hear all your stories as I have just been sick with worry these last two days. Has anyone got any advice?

Ah shandette am sorry to hear how your feeling.

I understand completely as I am in exactly the same boat. The midwife also painted a very grim picture for us which when I had time to think about I was very annoyed.

I think until they know for def whats worng they shouldn't scare people its awful.

I have to go for a scan next week I will be nearly 16 weeks am dreading going but hopefully everything will be ok.

I chose not to have amnio or cvs due to personal reasons but everyone is different.

Hope your ok and try not to worry sometimes a high nuchal fold measurement can mean nothing.

Take care x