Nuchal fold results - buddy(s) needed

[tazmo]

hi

I know this is not new but wondered if anyone going through the same thing right now at this time. Had nuchal test and odds of down's is 1/20. Was a shock as previous pregnancy I had 1/3000 and cannot believe it's so high! I am 40 right now, have 2 children and feel v lucky to have them. But I am worried about the difficult choice I may have to make if the amnio comes back positive for down. Am nearly 14 weeks and go back to have a chat and scan I guess for soft markers on 6 feb. Not sure if they do the amnio there and then.

I was a bit speechless when they rang but have been told to call if I have q's. All I know is that age is against me and my nuchal was 2.9 mm (upper range of normal). I haven't asked about bloods but something has knocked me up the odds scale!!!

Anyone going through this now? Advice on q's to ask is welcome!

T

[GladysLeap]

My nuchal/bloods came back as 1:24. I found out much later from threads on here that once you are over 40 your bloods are always going to come back with bad odds. I was 43.

I was pretty much railroaded into an amnio (mainly by DH) that I was terrified of. To her credit, my consultant did a detailed scan before she performed the amnio because she said she could see I didn't want to do it. She had a colour scanner and checked the blood flow to and from DD's heart, which was all normal.

You need to think about what you would do if you got the worst result at amnio. I'd always been convinced that I would automatically want to terminate for Downs but once I got to that point (having also had 2 mmc) I actually didn't feel I would be prepared to do that. DH was adamant he was too old to deal with a child with Downs. If you wouldn't terminate whatever the result is it really worth putting yourself through the anguish of an amnio? I was terrified I'd miscarry.

If I did it again (which I won't!) I think I'd have insisted on a detailed scan at 20 weeks instead of an amnio.

The only other way to think about your odds (and that's all they are at this stage) is if you had parked your car in a car park with 19 other cars and somebody came in and hit one of them, how likely is it that it would be your car? Or would you bet on a horse with those odds? 1 in 20 sounds high but if you turn it around it really isn't. it's 5/100. 5%. 95% chance of not being affected.

[cece]

I had results of 1:50 at the age of 40. I know how you feel - a terrible shock.

I did not have any further testing as I knew I would not terminate for DS. As it turned out I mc at 19 weeks.

I then went onto have DC3 at age of 42. With this pg I decided not to have any testing as I too felt that once you were over 40 I think it is very likely to come back high risk anyway.

If I had my time again after a high risk result I would do the same thing again and not have any further testing due to the risk of mc.

[Thenightwillalwayswin]

I'm going through the same thing. Had the blood test and it came back with a 1 in 6 chance of the baby having Downs. After much soulsearching we have decided to have the amino as the risk of the baby having Downs is so much higher than the amino risk. (Also our hospital has an incredibly low risk of 1 in 300 for aminos). I don't know what we will do if the baby does have Downs. But feel that knowing would be best, otherwise I don't think
I could get through the pregnancy without putting me and the baby under a lot of stress. Also the Downs Society say on their site that people cope better when they know in advance.

This is our first pregnancy and I'm 32, so age clearly doesn't matter. I'm going to be 18 weeks when we have the amino (on Monday). Have to say the hospital have been great but my community midwife when we told her was a. Rubbish and b. totally tactless. She asked me ' How would I feel if I miscarry a healthy baby?' There are more subtle ways to ask if we have considered the risk.

So I just wanted to say that you are not alone. It's a living hell, and you are forced to make difficult decisions when you are emotional and under a lot of stress (and a lack of sleep). Thinking of you.

[Thenightwillalwayswin]

PS Ask what the risk level is specifically at the hospital you would have it done at. If its higher or lower than the national risk level that could impact on your decision. (It did with us). Knowing the site had a lower risk level helped reassure me.

[tazmo]

Hi

Thanks for replies so far.

Gladys leap - I take it all was ok after amnio and you had a healthy baby?

Sorry ce ce to hear about your miscarriage. Did you find out why?

Good luck for Monday the nightwillalwayswin. Let me know how it goes.

I have pretty much resolved to have the amnio and know what I would do. But i would hate it!!!

t

[Thenightwillalwayswin]

Tazmo - will let you know how it goes. Keeping fingers crossed for you.

[rhetorician]

good luck; with dd2 we had odds of 1:11; dp was 41 (then) nuchal was 2.77mm. She is 8 weeks on sun and sleeping on my lap. perfect. it's hard to remember in the stress of it all that the numbers are still on yr side...it's tough, mn was a lifeline to us which iswhy i check in from time to time. good luck

[GladysLeap]

Sorry, I didn't mention the baby in the end, did I? She was born fit and well, and is almost 5 yo now.

[cece]

good luck.

No we were not able to find out why we lost our baby.

[Sportychick70]

Hi there
I had an NT measurement of 6.8mm at 12 weeks and the Dr said the cystic hygroma wasn't completely translucent (a bit milky) - they gave me the option of a CVS straight away which I did as the picture painted wasn't good at all 1:2 for T21, 1:3 for T18 and 1:36 for T13 and the nasal bone wasn't properly visible. We had to wait an agonising 6 days for the initial result which was just plain torment - but a relief as suprisingly everything was clear. A week later the measurement was down to 4.4mm, the nasal bone was oh so visible (both DH and i have 'strong' noses!) we are still waiting for the full result - apparently the chromosones are slow growing (it's been 25 days since I had the CVS). I'm 41, fit and healthy - I knew there would be hurdles but gosh, what an emotional roller coaster to date. My thoughts are with you all, fingers crossed, positive thinking and hugs x

[manitz]

sportychck wow hope everything goes well for you.

tazmo like sporty chick we had nuchal of6 and hydrops so i had cvs. baby had downs and i had a medical termination at 14 weeks. I found arc very helpful and also the downs syndrome association website was really informative about what life would be like with a child with downs. It helped me search my soul ifyou see what I mean. Hopefully you wont need to. x

[HOMEMADECHUTNEY]

Hi Tazmo, am so sorry to hear of what you're going through. I've had amnios on three occasions, and was reassured by research given to me by my hospital, which stated that the risk of miscarriage is actually more like one in a thousand than the oft-quoted one in a hundred.

Very, very difficult days for you and your DH, and the waiting is definitely the most difficult. FWIW, I've often heard that the bloods can often give a false positive for chromosomal abnormalities.

The very best of luck to you.

[QuietOhSoQuiet]

I had a result of about 1:50ish at 38 but I have a downs syndrome sister so I know about the reality of it.I had a cvs,was not rail roaded, at Kings in London and the consultant was very thorough as to why I was having it.No problems post but I took it really really easy,it came out completely clear of downs.

You have to make the right decision for you,but mine is now a 6 yr old pita that makes me question every inch of my being,but I would not have it any other way

[tazmo]

Good luck for tomorrow the nightwillalwaysnwin.

Homemadechutney - what were your odds and outcome if you don't mind me asking?

Quietohsoquiet - how is your sister? Would you have had a baby with down's? Did she have many health problems? If you don't mind me asking.

I am feeling a bit better but at the end of the day, the results are yes or no and is individual despite the odds. I have many questions for the hospital. Not sure whether to call tomorrow or nearer the time and just focus on the kids and work until ire ally need the answer. Feeling better but the issue is never far from my mind!!!

T

[Thenightwillalwayswin]

Thanks. I would definitely ring, because the more information you can get, the more it may allay some of your concerns. I have to say the hospital staff have been brill with us and very happy to answer questions I had on the phone following our initial consultation. Knowledge is always power, in my mind.

[QuietOhSoQuiet]

tazmo I may sound harsh but this is from my perspective only,no I would not have continued the pragnancy if he had tested positive for downs.I saw my mother as I grew up,the dedication she showed,patience,drive and commitment,all qualities that I would fail in as she is one in a million and I am not.This is from a person who had always been anti abortion till that point, where in the 24 hrs between being told my risks and having the cvs I actually had to get my head round the fact that abortion might have to be an option.

She does have health problems but nothing major requiring stays in hospital BUT what I see my mother going through still,she will be 70 next year,my sister is 41,my lovely mum never has any time to herself as she for all intensant purposes is still a teenager requiring constant supervision,yes she had a part time job in sainsburys but my parents are still full time carers and will be until the day they die.

Sorry if it sounds negative but this has been my journey,at times when younger I felt like an only child and wanted to go to boarding school just so I had time with others without my sister.God I sound horrible but it's what I remember.

You will make the right descision for you and your family,we all usually do.

[AdiVic]

Hello - don't panic just yet:) Last year I went through this, had nf of 5.8 (they consider anything under 3 as low risk in my nhs trust) and after bloods, a 1 in 2 chance. Things didnt' work out and I terminated. I have 2 sisters with learning difficulties and they are hard work. I do not regret my decision, but obviously it was very heartbreaking. I would ask your consultant/mw exactly WHAT has knocked your results up, I know simply based on age it knocks it up, and also perhaps the 2.9 (although classes as upper normal in your case). I am p again, so before I got in the door had odds of 1 in 100 (at 37). Ask as many questions as you want/can - you will prob find they are more supportive then you could imagine. On a positive note, there is a 1 in 19 chance all is fine:) Good luck, hope you are not too panicky xx

[tazmo]

Thanks for your Frank perspective quietohsoquiet - it is unfortunately what I know I would do for some of the reasons you mention. I would be too selfish ( and have a job that involves travel etc) but I also have 2 other children that I would be afraid would feel they left out. We also started late with the first one so again, as you say, would be looking after a child until youmare elderly and what happens to them when you die? We also have debt problems so I am also not sure what impact that would have on our already dire finances. Finally I have suffered with pnd so not sure I would cope. So I know what I would do but I am not for abortion just for the sake of it...so it is a difficult one.

Thanks a divic for your experiences also. I am really hoping to not have a horrible decision to make ... But it's the waiting game. The clinic called up about something else but they didn't have the full lab report back yet!!!! Bit of a pain!

Hope the amnio went well today thenightwil....

[Thenightwillalwayswin]

Amino seemed to go OK. Uncomfortable not painful, and bit sore now. Midwives and consultants were great. Now just have to wait for the results, but I do feel some weight lifted just by having had it done. Will let you know how the results go.

[tazmo]

Hi when will you hear?

[Thenightwillalwayswin]

They said 72 hours, so hopefully on Wednesday. I really am impressed at how good the staff all were today and it has helped put some of my wilder concerns to rest. I just hope the results are good news.

[tazmo]

Did you get told to rest? I will have to tell work if need more than a few hours off. Our hospital is generally good so I hope I have the same experience. 48 hours - is that for initial result? One week to go - I look forward to hearing your results.

[Thenightwillalwayswin]

They told me to take it easy for 48 hours, so I'm not going back until Wednesday. (Luckily my work is pretty understanding). 72 hours for the initial results and 2 weeks for the full, but I'm not too worried about the later results because as I understand it that is the very rare conditions.

[Thenightwillalwayswin]

We got our initial test results (much quicker than expected) and it came back clear. Relief doesn't really cover how we are feeling. It's such a stressful and scary experience, but please take heart from fact that the odds are in your favour. (Not that it made me feel any better). Thinking of you, please let us know how it goes x

[FantasticDay]

Hi. I'm surprised they didn't give you the blood test results. Our initial test results from the nuchal scan showed a high risk. (The ultrasound person refused to say what exactly - one reassuring thing he did say though was even it it's one in five, that still means that there is an 80% chance that the baby will be fine) . The bloods though took it down to 1 in 80. We didn't go on to amnio as we decided we would go ahead with pregnancy. Hope it all works out well for you.