NT risk and having a CVS next week

I tried to post this earlier but had computer issues and for some reason it showed a blank post. so here goes again, this is what was meant to show this morning when I posted...

Hi I just got a call from my OBs rooms to say he wants to see me at 4pm. I had the blood test done last week and the scan on Monday. my risk is 1:89.
age alone put me at 1:30 ...
my other pgs were Annabelle 1:143 and samuel was 1:552.
I have done a bit of reading and it seems DS babies have a higher hcg level which I did with my betas. on the scan on Monday his head measured 13w6, body was 12w6d and femur was 12w4d. By dating I should have been 12w2d.
am worried that having a larger head and shorter femur are a high indicator even though eh did have a nasal bone and all his fingers and toes looked ok.
has anyone else had a high risk or know of someone?
I am thinking of asking about the amnio. My DH isn't too sure and would just sit it out due to any m/c risk but I want to know.
DH is away too at a conference til Friday and only just got to the venue 3 hrs away when I got the call and then rang him.

help please
Judy

since then I have seen my OB.
He wants us to do CVS rather than amnio . he said the loss risk is the same for my age and the CVS gives a much more accurate result. we get the first result back in about 72 hours and then the rest in about a month after that... so I am booked in for 9:10am next Wednesday. If we do get a result showing a DS child then he will book us in with a paediatrician who will also monitor us for the rest of the pregnancy and beyond.
He said the scan results by themselves mean nothing, it is only by adding all 3 results together, age, scan and a high APPA (?) and hcg levels
He was pleased I think we decided on further testing although he did remind me we did stand a 1:88 risk of losing a normal child and that I could m/c anywhere up to 6-8 weeks after CVS or amnio due to membrane rupture. I guess I am only concerned really in that the placenta is on the rear wall of the uterus.
The Dr who does them is Peter Reynolds, the OB we saw on our first OB visit. He is lovely and I do trust him.
I keep in mind that Daniel survived the lions in the lions den so I hang onto hope that he will be ok and survive just fine.

I am hoping to hear from others who have had CVS as I am worried about it. My placenta is on the rear wall of the uterus and high up. I don't like needles as the best of times, then again who does.
thanks for any advice and thoughts
Judy

PS could a mod please delete my other topic headed "NT risk came back 1:89"
thank you

i dont have any advice or anything , but i wish you and your family the best of luck and hope during this shaky time ... and a h&H preagnancy ..

i too dont have any advice but wishu all the luck in the world.. hugs xox

I'm so sorry to hear you have this worry on your mind.

My thoughts are with you.

Jude,
I posted a long post and BB went down! :(

I am sorry that you have this anxiety - I understand how tough this is. Sending you lots of support and love :hug:

Okay - So the u/s was detecting no abnormalities. That is a really good thing. Some of the things we look for are: nasal bone, some soft markers - cardiac (too early for this) kidney, brain cysts. The measurements fall within normal for gestation - even though they are a bit here and there that is within normal parameters. I understand concern you have re: head size - if there was no abnormality seen this really isn't a worry.

Your stats are still good given your age. Whilst to me you are a beautiful young thing - like myself... :cryinglaugh: We can scare the beegeebees out of that lovely obstetric crew! Your age will have really had an impact of your ratio - so keep that in mind.

Women carrying a baby with a chromosomal abnormality (not just trisomy 21) often have high free BHCG and low PAPPA. But you can and be "normal" also.

Your risk of miscarriage is lower than your risk of chromosomal abnormality - but if your specialist has good stats - your chances of miscarriage are much lower. I haven't had a CVS - I have had 2 amnios. So I cannot give you a personal experience but I have seen a lot and most women claim it to be uncomfortable - but it is fairly quick - prepare to feel very emotional and make sure you have a loving hand to hold.

We are here to support you as you navigate this time. My thoughts and prayers are with you my love. :hug:

Hi Judy,

I am 26 and I had a DS risk of 1:3 with my daughter - I had an amnio done and my daughter does not have DS. My daughter does have other medical issues, however her NT fold is large and that is what bought the results back as such a high risk, now that she is born you can see a fat roll on the back of her neck, kinda like a double chin but on the back, nobody notices unless I point it out though and she is slowely growing into it.

Do not stress yourself too much about the risk that you have been given,it is just a screening test, I stressed myself out so much, and it was all for nothing as she is just fine, even if the results come back as having DS I know I would have loved her regardless and there is so much support out there.

We decided to find out the sex of the baby from the Amnio, it was a bit of good news that we knew we would hear and something to look forward too, I am not sure if this is an option for you but it is something to think about.

I wish you the best of luck :hug:, if you ever need to chat at all please not hesitate to contact me.

Deanne.

Hi, I had a risk of 1:41 and had the CVS procedure done. In our case it was important to get a result as soon as possible as my DH was about to leave for 4 months overseas. I felt the testing was necessary because if we'd been having a downs baby I wanted time to prepare myself. From the reading I did it seemed that, all other factors aside, the risks for CVS and amnio were probably about the same (given that a percentage of miscarriages after CVS may well have occured at that point without the CVS given the timing, kwim?).

I found the CVS procedure very scary although that was partly because the OB who did it had zero bedside manner, although she was highly respected for her work - the sonographer was lovely and reassuring and we also had a supportive genetic counsellor that we saw prior to the procedure as well as afterwards for the results. Apparently my placenta was in some strange position and it was quite difficult for her to get to it, so it was more painful than expected, but all was well and we now have a healthy, chromosomally "normal" one year old daughter.

Try to surround yourself with whatever support you need at this time. The million what-ifs that can go through your head at this time is what makes it so stressful. Try to distract yourself by spending time with positive people and doing things that you enjoy. :hug: Good luck.

Hi Judy.

Considering your age I'd say your result is actually pretty good. My combined risk was 1/37 - the age risk alone was 1/45 for me at age 41. My risk increased due to a high NT measurement. I had an amnio as that was what both my OB's recommended (I had just switched OB's when the results came in so I heard from both of them). I was told amnio had half the m/c risk of CVS but it's very rare for m/c to occur after either procedure and impossible to tell if the pregnancy ended because of it or if it was going to m/c anyway.

The amnio was not painful at all. I'm not sure how different the procedure is to having a CVS but I believe it's fairly similar. Don't look at what they are doing and you should be OK. I didn't even feel the needle at all. I just kind of felt a "whoosh" as the doctors hand came towards me. The hardest part for me was waiting for the results. The lead up to it all - worrying about the procedure etc was hard, the procedure itself not a big deal at all - then the long wait for results. I had my first results back in 24 hours and it felt like weeks.

My results both came back with no "abnormalities found" and sure enough Brock was born without DS or other any other trisomy.

Don't worry too much about the measurements. It's common for the measurements to show different ages. Brock also had low femur measurements throughout the pregnancy but it's just because he's a shorty like his mum.

Best of luck with it all. I'm sure you will find the procedure to be far better than you expect.

Hi Judy just wanted to pop past and say I'll be thinking of you tomorrow, hope it all goes excellently well! :hug:

Thank you ladies for your reply and thank you Marydean for coming back to wish me luck. I am nervously awaiting Dh to finish his breakfast so we can leave to be at the hospital by 9am.
wheres the icon of 'nail biting' worry

We all have our fingers crossed for you :crossfingers:.

Best of luck :goodluck:

Good luck today Judy, thinking of you.

Hi Judy,

By now you'll be in having the procedure... I'm so sorry I didn't see this earlier as I had CVS done about 7 weeks ago and could have shared my story before you headed off.

Anyway I'm sure you'll find it fine, like I did - it hurt when they put the needle in and they have to take several samples, which means they jiggle the needle around a bit when extracting the cells and that's a bit uncomfortable too. You will feel crampy in your abdomen and sore around the site for a day or two, I ached down low for about a week afterwards. They tell you to expect some bleeding - fortunately I had none.

I cried the whole way through the procedure because I had started crying about an hour earlier - we decided to have the CVS done straight after we got our screening results from the scan and BT - we came back 1/20 risk of DS or other trisomies.

The wait after the CVS was terrible but I got through... DH and I had lots of support from family, friends, our church and of course BB. We got the first lot of results back in less than 24 hours - that was the FISH test, which we opted for at extra cost to get the results back sooner. The FISH test ruled out DS, Trisomy 18 and Trisomy 13, to a 95% accuracy or something like that.

The rest of the results were supposed to take up to two weeks but ended up again being much shorter - about 10 days. These results were also all clear.

The position we then found ourselves in was questioning why we had such a high NT measurement - average was 6mm. I am only 28 and we couldn't understand what it meant. Obs said she still felt something could be seriously wrong - I was 14 weeks by this stage and we had to wait until a scan at 16 weeks to check cardiac formation. The Obs was preparing us for a major cardiac defect of some sort.

Miraculously the scan was all clear and now I waiting for my 20 week scan (on Friday) - which we are praying will also be all clear. After the 16 week scan came back all positive, the sonographer told us he thought it could possibly be a small cyst on the back of the neck or else the bubba just has a thick neck or an extra fold of skin.

You can imagine the relief we felt - I cried some more of course!

I'm praying for you, right now, that you will find the same thing as us.

Keep us posted and I am here if you want to talk, vent, ask questions. I promise I will check this thread now!

:hug:

Judy I just saw this now and wanted to wish you the best of luck today and know my thoughts are with you as you wait for your results.

Hi, Just wanted to wish you all the best for today. I had a cvs with dd1 due to 1:19 chance of ds and 1:30 of trisomy 18. I was 30 at the time and NTF was 6mm. All turned out good. the procedure was scary and I was in some pain afterwards. The mental anguish was the worst, waiting for the results. We got the FISH test back, which relieved us of some fears early on. I would have to say like a few of the others on her, that my beautiful dd was born with a really fat neck. It worried me at first, but it was just like extra folds and she eventually grew into it!!!!

Good luck

Love Melissa

Thank you so much everyone. OP I think we must have had palcentas in the same place.. it did hurt with him fishing around trying to get enough sample to send off.. still achy today.
Here is a copy and paste from my blog elsewhere
What can I say.. hmmm... ouch
He wasn't even sure he could do the procedure coz the placenta was practically in accessible, too far to the back and very high up. In the end he managed to find a tiny little avenue he could get to. So he got the tray of equipment ready and the midwife came in then to help and Robert left the room. I don't blame him, the look of the cvs needel laying on the tray would have been enough to scare off anyone!
So then the needles.... yes plural. First to deaden the skin was a sting and sharp sensation. 2nd was to deaden below the skin and for some reason I could feel that as a dull pain in the back of my left hip. 3rd was even deeper and this time I could feel it in my groin... yet all were given just above my belly button about 2cm to the left top. He did remark to Clare the midwife "13 wks, ever seen one this high up?" to whcih she answered never.
Then I shut my eyes tight... caught a quick semi second glance of the cvs needle and that was enough for me!!!
I could feel the first 3 times he took a sample and would withdraw it each time to deposit the sample in the special bottle with nutrient medium. t felt like a pulling and discomfit dull ache and made me wince. The last 2 samples I didn't feel.
OB did say although technically he was very happy with todays test he was not as happy with the amount of sample as it was so hard to get to and he didn't get as much as usual as so little room to work with so if it comes back as unworkable then in 3 wks they want to do an amnio. That involves only 2 needles though and much easier as he has all the front wall he can use and only has to take a bit of fluid not try and find a particular patch of tissue.

Cramping afterwards... big ouch. I was given 2 panadol and a script for panadeine forte to fill on the way home. I was allowed to lay there for another half hour then they were going to give us both a cup of coffee but had run out of milk so I decided we'd just go home.

Walking was abit hard coz my tummy was sore due to the fishing around he had to do to get to the placenta... if you ever need a cvs you better wish for a nice low anterior placenta!
By the time we were enaring home and the bumpy part of the road the local anaesthetic was wearing off ... I came straight to bed, had my panadeine forte 2 hrs later and tried to sleep.
We get the first lot of results on Friday afternoon. We eledted for the 3 probe FISh rather than the 5 probe as we have had some genetic testing done alst eyar so only real worry about DS.. most of the other chromosone checks will pick anything up anyhow and those reuslts will be back when I have my regular OB appt on the 16th

So now we just wait for the results and hpe that he did get enough and I don't have to have an amnio as well.

i hope everything turns out well after all that! be proud ofyourself, it must have been a battle. fingers crossed that Ds is well, healthy, and free of problems :)

Judy - I'm glad you survived the CVS. Sounded pretty nasty. Now that I think about it I remember one of my OB's saying the reason they didn't recommend CVS was the likelihood of having to do an amnio anyway if they had difficulties getting enough fluid to test. Rest assured that if you do have to have an amnio it's nowhere near as bad as what you have described. That said, I hope they got what they need and you don't have to go through it. I hope you get the first lot of results nice and early as I know how hard it is sitting around waiting for them.

Judy, all the best while you wait for your results.. I was 26 and my combined blood and NT scan gave me a 1:12 risk, we had the CVS also. We had our test on the Friday and got the results on the Monday, i remember it being the longest weekend ever! We also found out we were having a girl when we recieved our results.

So, hope that you & DH are doing ok, its hard waiting for the phone call with your results..xoxo

:hug:Judy- im glad yesterday went as smoothly as it could go- im sorry that it hurt so much!!!

I am thinking of you constantly and hoping for some reassuring news for you and that little Daniel stays put and happy for the next 6-8 weeks

xoxox
Katti

Judy, glad that the CVS is over and done with now, I guessed it might be quite ouchy like mine was. :hug: Just thinking of you and sending you lots of relaxy happy energy while you wait for the FISH results.

PS my abdomen was really quite sore for a good ten days or more afterwards so remember to rest up and take it easy whenever you need to.

Thanks MD I was wondering how long it would hurt for. It mainly hurts around where th eneedles went in especially if I touch it against anything like the sink while washing up so DH has banned me from washing up for a while. We have enough teenage boys and boarders living with us who do nothing so he is going to try and get them to help out. We tend to collect strays lol.. kids over 16 up to ummm... the latest is 26.... so far we now have an extra 4 along with our own 4 kids and grandson.
I just so hope that they did get enough to do a proper work up and not have to call me back for an amnio.
I still have m/s too luckily no throwing up at the moment to stess the tummy muscles... but by 3pm I feel so ill :(
hugs to everyone :hug: :)
Jude

Hey Judy,

I'm so sorry it hurt so much - sounds like mine. I was very tender around the actual needle site for a week or two, like you, so as MD said take it easy!! Rest and relax.

I have no tips for the horrible wait you are about to endure... for me it dragged by, every day was a killer. People say relax, do stuff with friends, take your mind off it... well for me, that's great for weekends and outside work hours, but it was while I was at work and staring out the window that the time dragged.

All I can say is you have to stay strong and positive - for me I spent a lot of time praying and bargaining with God... whatever your faith is, try and find strength there. You've been given this bubba for a reason, have confidence in that.

Big :hug: for being so brave... and keep it up...

PS - I would have shot my DH if he'd left the room while it was happening!!! I was holding his hand so tight it was impossible for him anyway!!!

I just got the call from my OBs rooms and the 3 probe FISH came back as all clear and normal. So Daniel James is growing well.
Feeling crook with m/s and a very hyper-active 4 yr old today.. great combination.
hugs
Jude

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I just got the call from my OBs rooms and the 3 probe FISH came back as all clear and normal. So Daniel James is growing well.
Feeling crook with m/s and a very hyper-active 4 yr old today.. great combination.
hugs
Jude

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so this means DS is all well and no problems? wooohhhoooo! you must be so pleased! well done :)

Congrats Judy, I am very relieved for you! Hope the rest of the pregnancy goes smoothly for you.

:cheer:Jude!!!! I am so releived for you!

WARNING TO THOSE THAT HAVEN'T HAD A CVS TEST BEFORE THIS MAYBE DISTURBING TO READ !!!!

Oh JUDE, ... I have such a fear of having another CVS as in my experience I thought it was much worse than the actually giving birth to my daughter :rolleyes:

(I would gladly go through a drug-free birth any day)

Lucky for you that they didn't lay the massive needles across your chest ... and then have the Doc whisper "I haven't done many of these so I will get another Doctor to come in & supervise me"

OMG, I think I went into mental shock ... though no one knew !!

DP almost fainted when he saw the needles .. the nurse had to attend to him to help him. He too couldn't believe they laid all the needles on my chest on a surgical sheet right under my nose to see.

The Doc that came in argued whilst standing over me with the other Doc doing the CVS ... telling her she wasn't doing something right. I was freaking out as I could feel everything ... nothing felt numb at all. I felt pain, cramping, crunching, stinging ... was too awlful for words.

Two minutes after the procedure I was then told to leave. No letting me lay for a bit.

As soon as I left the room I had severe cramping & could hardly walk.

Please my advice to anyone is to NOT go to a PUBLIC hospital if possible. I think this was the problem, having inexperience staff (So sorry I do not have intentions of putting the fear into anyone BUT just to warn those that might read this & understand what COULD happen in a Public Hospital ... HOPEFULLY my situation is extremely rare :pray: ... which I'm sure it is)

BY THE WAY, paying EXTRA $$ for the FISH test is so worth it ... I couldn't not have stood to wait any longer for the results ... too anxious ... Thankfully the FISH test gets the results quicker & we have that OPTION :dance:

I WISH YOU THE ABSOLUTE VERY BEST JUDY (I had my 1st bub at 40) :D ... MASSIVE HUGS FROM LORELLE xoxoxo

Judy I'm so glad the Fish was all clear!!!!!! One down, one to go!

:hug:

Jude i am so glad your test has come back clear. I went for the 12wk screening test and mine come back with a good reading, i really don't know if i could have gone through with an amnio or CVS if my rating wasn't good.....you are so brave!
Smile4U OMG....i think i would have jumped up and ran out of there as quick as i could. I can't beleive Dr's can be so insensitive as to do something even like that...i would have made a complaint about that for sure!

Smiles4U is there any way you can lodge a complaint? That sort of treatment even if it is a public hospital is competely unethical and should not be tolerated. I was lucky that the needles and everything were on a medical trolley off to the side behind my vision. i am a nurse but stuff like that is still scary when it is you it is happening to. Besdies I last worked back in 1991 and that was in a aged care facility.
I must admit i am glad it is over and done with and I don't need an amnio as well. so pleased about that.
Now onto the next milestone, the 19 week scan :)

hugs
Jude

Judy, so pleased the FISH has come back back all clear, you must be so relieved! :D! and :hug: Hope you find some energy soon.

Smiles4U - sorry you had such a disturbing and completely sub-standard experience. However I don't think you can conclude that the problem is public hospitals as some are excellent. I had my CVS & genetic counselling all done through the Fetal Medicine Unit at TCH here in Canberra, they are the tertiary hospital and therefore the very best available in the region.

Thanks ladies for your concerns ... not having had a CVS before I didn't know whether the way in which it was handled was the norm :rolleyes:

Also I was under a lot of stress due my parents stop communicating with me during my pregnancy & a long time friend just stopped contacting me ... the grief they caused me was unbearable ... and I wasn't going to chance losing my baby from anymore unnecessary stress, as I had once before through the huge amount of stress a co-worker had caused me :crying:

You are so right MARYDEAN ... thanks for pointing that out !! ... I guess it's obvious that I have had more negative experiences out weighing the positive experiences I have personally had in public hospitals. I guess also it didn't help that many of my clients at work were Doctor's & drummed it into my head to never have surgery in a public hospital as they told me it's the trainee that is holding the knife not the qualified surgeon.

THANKS all again ... and JUDES you take care of yourself too lovely Mummy ;)

Jude - congratulations on the test results. If my frostie is really sticking given my age I'm sure I'm in for an amnio or CVS in a few months...and in any event, I'd want one.

All the posters who have gone through this sound so brave to me.

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I tried to post this earlier but had computer issues and for some reason it showed a blank post. so here goes again, this is what was meant to show this morning when I posted...

Hi I just got a call from my OBs rooms to say he wants to see me at 4pm. I had the blood test done last week and the scan on Monday. my risk is 1:89.
age alone put me at 1:30 ...
my other pgs were Annabelle 1:143 and samuel was 1:552.
I have done a bit of reading and it seems DS babies have a higher hcg level which I did with my betas. on the scan on Monday his head measured 13w6, body was 12w6d and femur was 12w4d. By dating I should have been 12w2d.
am worried that having a larger head and shorter femur are a high indicator even though eh did have a nasal bone and all his fingers and toes looked ok.
has anyone else had a high risk or know of someone?
I am thinking of asking about the amnio. My DH isn't too sure and would just sit it out due to any m/c risk but I want to know.
DH is away too at a conference til Friday and only just got to the venue 3 hrs away when I got the call and then rang him.

help please
Judy

since then I have seen my OB.
He wants us to do CVS rather than amnio . he said the loss risk is the same for my age and the CVS gives a much more accurate result. we get the first result back in about 72 hours and then the rest in about a month after that... so I am booked in for 9:10am next Wednesday. If we do get a result showing a DS child then he will book us in with a paediatrician who will also monitor us for the rest of the pregnancy and beyond.
He said the scan results by themselves mean nothing, it is only by adding all 3 results together, age, scan and a high APPA (?) and hcg levels
He was pleased I think we decided on further testing although he did remind me we did stand a 1:88 risk of losing a normal child and that I could m/c anywhere up to 6-8 weeks after CVS or amnio due to membrane rupture. I guess I am only concerned really in that the placenta is on the rear wall of the uterus.
The Dr who does them is Peter Reynolds, the OB we saw on our first OB visit. He is lovely and I do trust him.
I keep in mind that Daniel survived the lions in the lions den so I hang onto hope that he will be ok and survive just fine.

I am hoping to hear from others who have had CVS as I am worried about it. My placenta is on the rear wall of the uterus and high up. I don't like needles as the best of times, then again who does.
thanks for any advice and thoughts
Judy

PS could a mod please delete my other topic headed "NT risk came back 1:89"
thank you

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