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Nuchal fold Measurement - Amnio?


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#1 BananaJ

Posted 10 December 2005 - 07:52 PM

Looking for some words of advice - hope you ladies out there can help

I have just had my 13 week Nuchal Scan w/blood tests and my results came back at 1:1001.  The tech guy went over my results with me and mentioned that bubs Nuchal Fold measurment was high - 3mm - well above average, and he was a bit concerned - which ofcouse has gotten me into hysterics!
But my blood, age (29) and family history brought my risk level down.

I can't get over this "3" and how high above average it is.  This is my second pregnancy, so I rushed home and compared my first bubs report with this current one.  Completly diffrent -odds where 1:7830, nuchal of 1.4mm.

Love to hear from anyone who has had a reading above 3mm, what they did about it?

Also, for all those ladies out there who have had an Amnio - would like to know your experience, what I should look for in a doctor, how much does it cost and any dr reccommendations (i am in brisbane)Has anyone had any problems following the proceedure?

I know that I won't enjoy my pregnacy for i will be constantly thinking about DS. I would end the pregnacy should the results come back positive.  But, could I live with myself if I got the amnio done, miscarried, then got the test results back to say everything was okay???  

Does the 18 week scan help shed any light on DS or is my only option to have the amnio?

Thanks in advance for everyones thoughts and support

#2 meggy

Posted 11 December 2005 - 05:48 AM

Hi I am sorry you are having such a hard time.  I personally have not had an amnio but went in with my best friend when she had hers and it seemed very strait forwar.....  She went up in Brisbane to I think a Dr Pritchard everyone raved about him he used the 4D ultrasound which was amazing.....  She had no problems and everything turned out perfect.   I don't think the 18 week scan is any use if there is a chromosonal problem I think the amnio is the only was they can find out for sure.  In saying this look at your odds still 1/1000 is still pretty good.  try not to stress yourself to much go and have a chat to your OB or doctor and see what they think.  I hope it all works out okay for you.

#3 CJsMum

Posted 11 December 2005 - 06:09 AM

Hi Redracer,

I was recently in a similar situation but my outcome was not good.

My measurement came back at almost 7 (although the dr said they were being kind) and I was told that they like it to be <0.65 (going from memory here - I was kind of drifting in and out of consciousness by this stage). Anyway I was given a 1:3 chance of a serious abnormality. My baby also had a large amount of fluid on his brain and around his chest so it was quite obvious that regardless of the results, my baby was very sick.

I had a CVS the same day. I don't remember it being painful, truth is I was so shell shocked I don't remember much at all. I do remember though, that I needed answers. And I needed them now. My son was diagnosed with Trisomy 18 and we made the agonising decision to terminate a week later.

I truly hope you are never faced with that decision. But completely understand your need to know. In answer to another question, the 18 week scan would most likely highlight any abnormalities but by that stage you are fairly well progressed in your pregnancy. If you were to need a D&C, the doctors don't like to do them after about 14 or 15 weeks which would mean if you were to lose your baby they would have to put you into labour and you would deliver.

It is such a terrible position to be in. I pray that everything is perfect.

Please keep in touch and let us know how you get on.

Take care,
Michelle x

#4 BananaJ

Posted 11 December 2005 - 10:17 AM

Thanks for your support ladies - another sleepless night last night - trying to get in to see my gp on tuesday and hoping she can shed some light and give me some direction.  After the scan, they made me an appointment with the genetic councellor, but I wasn't listening to a word they said for they were not saying the things I wanted to hear like "don't worry, everything is fine"
Guess we will just wait and see, fingerscrossed ;-)

#5 Chantz

Posted 11 December 2005 - 11:50 AM

Hi, Sorry to hear you are going through this.

I actually have a not so good experience, and a good experience.

My not so good experience happened 3 years ago. I found out I was PG just after being told that I had PCOS and Endo. DH and I were so happy and excited and never thought that anything could go wrong, we just thought we had a little miracle. Then we had the NT Scan. We didn't know anything about it, just that it was a test for DS. My OB called me with the combined results of the BT and Scan 1:10 chance of Downs. He sent us to a specialist sonographer who couldn't see anything. He then asked if we wanted the Amnio. I knew something had to be wrong so we said yes. They ultrasound to see where the baby is and then basically really quickly shove the needle in incase bubs moves. After the shock of the needle, bubs had moved and he could see the Nuchal Fold. He said straight out that it looked like Turners' Syndrome which only affects girls. We had to make a decision before the official results of what we wanted to do as up until 16 weeks we could terminate under a general, 16-20 weeks is induction so you are awake and after 20 weeks you have to get permission from the medical board which is apparently rare. We had 48hrs to decide and chose to terminate. 3 weeks later we got the results and we had made the right decision. We were told she only had a 1% chance of surviving the pregnancy. The cost of the amnio was approx $300 of which we got about half back from medicare.

As you can see from my Sig we are PG again and due in 8 weeks time. We had the NT Scan and watched the measurements this time as we had been freaking out. There were measurements of 1.8mm 1.9mm and 2.3mm as she was moving around alot. Apparently the slightest movement can affect the results, this is why the BT is done with the scan. My OB has told me that the BT is actually more accurate than the scan, but to get an accurate result the BT and Scan should be done. This time we got a risk rate of 1:8080 which we were happy with.

Have you thought about having another NT Scan to double check the results? I think if I went through my experience again and got a high risk, i'd have a 2nd NT Scan and if the results were not good then i'd have the amnio as the amnio does increase the chance of m/c. Also having said that, I know someone who got a high risk result but bubs was quite active, she had another NT Scan and bubs was sleeping and the result was extremely low risk. Although I do think 1:1001 is still quite good.

Good luck and I hope everything turns out for you.

#6 dehalan

Posted 11 December 2005 - 06:12 PM

My 13 weeks scan gave us results of 1:8 ....yep... that;s right...no digits missing.

we had a CVS straight away at Brisbane ultrasound for Women, aka Dr Pritchard.

the results came back clear!!!  No chromosomal abnormalities.

The nuchal fold measured 4.8....

I wish you much luck.  Personally, I would have the CVS...but yes there are risks involved with that too.

#7 BananaJ

Posted 11 December 2005 - 07:19 PM

Is the CVS test the same as an Amnio?

#8 dehalan

Posted 11 December 2005 - 07:39 PM

no it is not.  

I have answered your pm and exlained.

#9 Supernova2012

Posted 11 December 2005 - 08:42 PM

I had the opposite problem- nuchal fold was apparently good, but combined with blood test, not so good- 1:500.  The Drs all said that was low risk, but it really worried me.  I decided not to do anything but felt very detached from the pregnancy. It helped my decision that a high % of downs babies miscarry naturally and many have defects which are detectable at the 18 wk scan (although this is obviously not always the case).

At the 18 wk scan they thought the baby had a hole in the heart which is a downs marker. We had the amnio that day, which was not pleasant but quick and bearable.  I'm not in Bris so can't recommend anyone. The amnio showed no chromosomals problems and was such a relief.  I am so glad that I had it, and next pregancy we have decided to have a CVS without doing the nuchal fold.  

Do a bit of research- I read an article on the internet which said that some British Drs are finding that they detect the same % of downs babies using blood tests only as they do with the nuchal fold and blood test combined.

#10 ~TCBF~

Posted 11 December 2005 - 09:21 PM

At my NT scan for this pregnancy, the sonographer also checked for a nasal bone. Apparently its not present in babies with DS.

This is only a very recent thing though, with my pregnancy last year, this wasnt checked and I went to the same place both times.

Apparently the nuchal measurement gives you 80% accuracy, combined with the blood test its 90% and with the nasal bone check its 95%.

Maybe you could look into this??

Good luck!!!

#11 **LYN**

Posted 12 December 2005 - 09:11 AM

Hi Redracer,

My own experience (due to my age - I am 40 now) is quite different.  For both of my pregnancies getting odds of 1:1000 was great news but then this time on age alone my risk was 1:40.  Remember this means you have a 999:1000 chance of having a normal baby.

I have 4 friends who have all had amnios.  2 went straight to an amnio without the NT scan because of their age and the others got a high risk result form the NT scan and bloods so had the amnio.  None had any problems during or after the procedure and all came back clear.

Good luck with your decision.  I don't envy you.  let us know how you get on.

Lyn

#12 Etcetera

Posted 12 December 2005 - 12:09 PM

http://www.babycentre.co.uk/refcap/544491.html

This site says that 9 out of 10 babies with a measurement of 2.5-3.5mm (borderline) are perfectly healthy original.gif

#13 cuteck

Posted 12 December 2005 - 02:30 PM

Hi

I had my NT Scan early this year and our result was that our son's neck's measurement was 2.7mm which is considered quite hig.  Combined with my blood test results our chances were 1:3 and take out the blood results were back to 1:59.

We were not able to do CVS so we had to wait 4 weeks for amnio which was just hell for us as our whole world turned upside down.  The amnio itself was painless we had to wait a few days for the results and unfortunatley it was confirmed that our son had Downs.  The day we made the decision resulted in our son being born the next day.  I am based in Brisbane and had dr Paul Shiver at the Dignastic centre for Women on Asctor tce ( near the novetel) perform it and I checked around and she is the best for these types of thing.

I hope that things turn out better for you than they did for us.

#14 BananaJ

Posted 12 December 2005 - 07:19 PM

Thanks for referring me to that site - it is a wealth of information - probably all the same info the genetic councillor was telling me when I wasn't listening.

Cuteck, thanks for the dr referral and I am sorry for your loss.

#15 ~Danni~

Posted 16 December 2005 - 11:24 AM

I couldnt not reply to this topic.  Im 32 and had the NT scan/blood test combined and my NT measurement was 2.8mm, with this figure my risk was 1.433, but with my blood test, my risk went up to 1:53.  I was offered an amnio and declined because I bled at 9 weeks and was worried Id lose the baby, but also, I knew that even if my baby did have DS then I wouldnt have terminated, and I am so happy that I didnt.  MY DD was born in October and yes she does have Downs and also a small hole in the heart.  I know that with my next PG I will have to have an amnio because my first child had chromosomal abnormalities, I dont think Id be able to handle 2 special needs babies.

#16 BananaJ

Posted 16 December 2005 - 07:39 PM

Just wanted everyone to know that I have gotten an appointment for an amnio on the 3rd of Jan at the Royal Brisbane Womens hospital. I was lucky that they were able to fit me in with christmas/new years holidays and such. My gp told me just to relax and enjoy the season for there is nothing we can do until the new year.  If i think this waiting is killing me, I can't imagine what the two week wait for test results is going to do to me ;-)
Just wanted to thank everyone for all the advice, feedback and life experiences, may you all enjoy this festive season and best of luck in the new year, thanks again

#17 Supernova2012

Posted 16 December 2005 - 07:54 PM

Hi Redracer, just wanted to say that if you pay an extra $200 you can get the results in 24 hours from an amnio.  It is called a FSH test.  Also, they can tell you 100% what sex the baby is!  Be comfortable now you have made the decision, and good luck.

#18 ~Danni~

Posted 16 December 2005 - 08:58 PM

QUOTE
At my NT scan for this pregnancy, the sonographer also checked for a nasal bone. Apparently its not present in babies with DS.


My DD has Downs Syndrome and she has a nasal bone so, not all children with DS dont have nasal bones. I just want to ask a question to you all.  If you didnt have the NT scan or an amnio and then had a baby that had DS would you not love it anyway?  I wouldve loved to have a "perfect" baby, especially with my first PG but I wouldnt trade Paige for any "perfect" baby. Sorry if I upset anyone, but its my opinion.

#19 TazzieD

Posted 16 December 2005 - 09:44 PM

Hi all
I couldn't not reply to this thread either. My first pregnancy last year resulted in an angel - my little boy had Trisomy 13.

My NT scan was done at Diagnostic Imaging for Women (on Astor Tce) and I was so gutted at how they treated me that I went to Brisbane Ultrasound for Women for my CVS - my result you see was 1 in 10. Not a fantastic result at all (the nuchal was at 4.5mm and bloods were bad). Brisbane u/s were absolutely wonderful and they fast tracked the results with the FSH procedure so we found out the next day about the Trisomy. By the way, there was no nasal bone (although they did say to me at the time that it isn't always a marker).

With this pregnancy I went back to Brisbane u/s for my NT scan and was so relieved (and cried my heart out) when I saw measurements of 1.2mm. OMG how much did my heart sing! I was so concerned as my background risk having had a prior Trisomy was pretty high.

Just another bit of info here, I only had the original NT scan because I wanted to see the baby. I was 28 and healthy with no family history etc - and it was the best decision I could have ever made. I recommend the procedure to everyone I know as it can help you prepare for your child, even if you aren't going to terminate.

Redracer, good luck with getting through the next few days until you have your amnio.  I know it will be probably the longest few days of your life. If you can afford the FSH I recommend it. All my best wishes that the amnio shows a false positive reading with the NT scan

Taz

#20 TwoForMe

Posted 19 December 2005 - 03:16 PM

Hi Redracer,

Firstly congrats on your pregnancy!!  

I too had a high risk result from my 12wk scan (Pg with second child).  We came back with 1:158 with a measurement of 3.23mm.  I had the amnio - I found the mental pain far out weighed the physical pain.  We have thankfully had a great result we are in the clear, but I can totally relate to the long long wait.  It is terrible.

Your result of 1:1000 is great - think of it this way....if you are standing in a room full of 1000 people only 1 person in that room will unfortunately have a problem!

Good luck with everything on the 3rd Jan I am sure you will have nothing to worry about.  And remember that whatever decision you and your DH make IS the right decision.

#21 BananaJ

Posted 06 January 2006 - 07:03 PM

Hi there Ladies, Redracer back again.  Just wanted everyone to know that I had my anmio on tuesday at the Royal Brisbane and Womens Hospital.  I wasn't as scary as I thought it would be.
I had a great doctor, she gave me an ultrasound for a good 10-15minutes, then gave me a small needle to freeze my belly - it felt like an ant bite, nothing more. Then the larger needle came along, I felt a bit of pressure as they removed some amnio liquid.  The entire procedure only took a couple of minutes.

I have taken the last couple of days off from looking after my 16month old, hubby has had the great experience of being a full-time mum for the past couple of days - much to my surprise, he has passed with flying colors.

I have been a bit tender, slight cramps but nothing to major.  They say to take it easy in the first 48hr for that is when there is a greater risk of miscarrage, mind you, the dr also mentioned that I could have complications up until 3 weeks but it is highly unlikely - I told her not to mention the highly unlikely part to my husband so i can milk it for all it is worth :-)

Well, good new, I got back partial results yesterday - looks like we are clear for Down Syndrome.  I have to wait two more weeks for further results.  

I just wanted to thank all of you for your support, experiences and a shoulder to cry on.  I wish everyone a happy and healthy 2006, thanks agin ;-)

#22 Cheryl_v

Posted 06 January 2006 - 08:03 PM

I didn't read the whole thread so sorry if I'm repeating something.  When I had the nuchal u/s plus bloods at 11w3d with #4 the results came back just slightly out.  I was sent to a genetic counsellor because although none of the figures by themselves were of concern the pattern was a little worrying.  After talking to the genetic counsellor I decided to go off for a CVS which was booked for the next day.

When I spoke to the specialist who was going to do the CVS I brought up my main concern, which was that since #2 has heart defects that this nuchal result was showing signs that #4 would also have heart defects.  She said that it was fairly unlikely due to the low-ish number for the nuchal thickness (2.7mm) and that CVS wouldn't show that up anyway, which I knew.  As it turned out I was one of those few people who couldn't have CVS because the placenta was implanted in the wrong place for either abdominal or transvaginal access so I just asked if I could have a repeat nuchal (which they do not recommend, they don't know which result is accurate so they prefer not to do this at all) and the nuchal thickness at 12w3d was under 2mm.  

Long story short, we had a foetal echocardiogram anyway because of the family history and the baby was born perfectly fine.  The CVS lady had said to me that the bloods refine the percentage risk so having your risk drop after the bloods were factored into it is definitely in your favour, if they had made your risk go up then there would be more chance of a problem.  If I were you I would probably still request a foetal echocardiogram to check your baby's heart, the standard structural ultrasound doesn't have a very good success rate at picking up a lot of heart defects.

I'm glad to hear your amnio went well!




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