To nuchal scan or not to nuchal scan...

[waitinggirl]

We are 11+2, had dating scan today (2 m/c last year, including a missed m/c, so was very tense) and all seems fine.

I am 35 and was expecting to be offered a nuchal scan as a matter of course. However it was offered as a choice, not as a matter of course and we were expected to make up our minds on the spot. We just couldn't, so we declined it. DH and I have no knowledge of Downs, but right now we couldn't even possibly think of terminating a pregnancy because the baby wasn't "perfect", that's why we've declined it. Are we being naive? Our parents have made it perfectly clear that they think we are idiots for refusing the scan.

I suspect I am terrified of it coming out positive, and then I would really have to challenge my views and consider the alternatives.

Has anyone else had to wrestle with this?
Anyone got experience of Downs?
How have other people arrived at their decisions?
Should we have been offered the test as a matter of course?

By the way, we know that it isn't invasive and it is only amnio and CVS which may possibly harm the baby.

Any thoughts/advice gratefully received
Thx

[PrettyCandles]

I think that the important issue is what you would do with the knowledge. If it makes no difference to you, then there is no point in having tests.

We thought it hghly unlikely that we would terminate unless something incompatible with life was diagnosed. But we decided that we wanted to know in order to be prepared.

[MissusH]

Hi, I'm also 35 and 23wks with my second. the nuchal scan is not offered here on the nhs and would have had to pay £180 to go private (which would have been a bit of a financial strain but could have managed it)

Discussed it with DH and we both agreed that we couldn't terminate so decided against the scan. For the same reasons I refused the triple test at 16wks. The hospital was fine, totally acceped my decision and didn't pressue me in any way.

The 20wk scan was fine, everything looking okay with no apparent markers found.

DH & I have a "what will be will be" attitude and will deal with anything that comes along at the time. I didn't want to spend the remainder of my pregnancy worrying.

[MissusH]

Ooh - also, my midwife says that low risk doesn't necessarily mean no risk.

I agree with Prettycandles. It is what you would do with the knowledge that matters.

[Alexa808]

I had a 12 week scan and a twenty week scan yday. Both were fine and I shall be going for my last test at 32 weeks. In private care you get screened once a month but I've declined a few scans.

It is totally up to you what scans or screening you accept or decline. Personally I felt the 12 weeks scan was over very quickly (20mins) and not invasive or uncomfy at all. I had a very kind sonographer who explained the babies limbs and what she was looking for. If you get additional blood test done the results are quite accurate. I didn't have bloods taken.

I think having this scan was great, to see baby, see the heart flutter and make it all the more real to me. Also, if there is an issue you can prepare yourself and will be referred to doctors who can give you and baby the best possible care and start into the world. Best of luck with whatever you decide to do.

[MillyH]

Waitingirl and all. May I add my twopennyworth?
Please, please make sure you fully understand what you are being tested for. I had the nuchal and bloods at 12 weeks and got a very low probability at of Downs. However, at the 20 week scan signs of Edwards syndrome were picked up and later confirmed. We terminated after being told my beautiful boy would only live for a few minutes, if at all. The NHS test in my area only highlights for Downs, not the rarer 'trisomies'. So do get a clear answer for your area. And as others of said there is plenty of stuff out there that cannot be picked up by screening.
Secondly, do find out what Downs can really mean, if it is key to your decision making. It can mean anything from mild learning disabilities, through severe mental disability and heart defects, to fatal abnormalities e.g. no kidneys. I don't know what the probabilities are of mild or sever effects but you might want to find out. Unfortunately at the 12 week stage and even until birth no screening tests can tell you for how severe the disability is, though you can tell some of the severe defects later in pregnancy (20+wks). Since losing my boy, I have met a lot of women who said " I never thought I would terminate but when I found out XXXXXX ". I also read somewhere of an Australian survey that showed that before being presented with the situation 70% of women said they would never terminate for Downs. However, when presented with the reality of a diagnosis 70% of women did. Sorry I can't remember where I saw the survey or I would add a link.

Please don't think I am saying any of this in order to change your mind it is absolutely your choice. And I am sorry if I sound a bity preachy, but I really do want you and everyone else to be able to make their decision on the widest amount of information available.

BTW I think you are great for devoting so much thought and attention to this subject. Lets face it,it's not a fun subject. It's so much easier just to think about the cute things like choosing cots and clothes.

If you do decide you want to be tested, I would phone the hospital you are assigned to and ask to speak to the Antenatal Screening Midwife/Coordinator and explain what has happened.

[aiti72]

We opted for a nuchal scan (36 years old mum) and had a 1:2 risk for one of the three most common trisomies: 21(Downs), 18(Edwards) or 13(Patau). The coin turned right way around for us and our girl has healthy cromosomes, however, had our baby had Edwards or Patau we would have terminated the pregnancy -these trisomies are incombatible with life. It would have been too much to carry a child for nine moths, give birth, introduce her to her sister, if she had only hours or days to live! I find it slightly annoying that people here generally only talk about Downs when the topic of nuchal scanning comes up.

[aiti72]

You beat me to it, Milly. I am so sorry for your loss.

[getbackinyouryurtjimjams]

We didn't have a nuchal with ds3 (ds1 is severely disabled with a condition that can't be picked up until a child is about 18 months old at the earliest-any children of ours are at high risk- seemed pointless to terminate for DS - when DS is generally less disabling than ds1's condition).

We did have the triple test because I wanted to have a chance of picking up anencephaly early (the nuchal- well any early scan) will do that. We would have terminated for that.

We wouldn't have terminated for edwards or pataus although that's quite an unusual decision and I can understand why people do.

I think knowing what you would do with the results is the way to play it really. It sounds like you made the right decision for you. A detailed 20 week scan will usually pick up babies at risk for major problems such as trisomy 13 and 18.

OUr most tested baby (ds1- had every test going - and would have terminated for a lot more in those days) is the one with the severe disability.

[jingleyjen]

We had nuchal scans with both of the boys,
we did it to prepare ourselves for the future... we would not have terminated.

[MillyH]

Thanks aiti. He was lovely, and I still miss him.

[eidsvold]

cantsleepwontsleep some heart defects are picked up at 20 weeks - with dd1 the local hospital told us she had hypoplastic left heart syndrome so referred us to Kings to a fetal cardiologist who actually diagnosed dd1 with a complete Atrial ventricular septal defect - big difference in life expectancy, type of surgical intervention needed etc.

aiti the reason everyone focuses more on down syndrome than the number of other conditions which an increased nuchal fold can be an indicator of; the medical profession itself. When pregnant with my three children the emphasis on testing to learn if your child has down syndrome was immense. Very little was said about the other trisomies, other chromosomal conditions and heart defects. Even after having a child with down syndrome ( no nuchal fold testing) and doing even more research into antenatal testing, I had a genetic counsellor tell me I was totally wrong to think that an increased nuchal measurement indicated anything other than down syndrome being present. So if this is what the professionals are saying it is no wonder people think like that.

If you do not want a nuchal screening then don't have one - if you have to know or would act further on the information, then have one.

If you would like further information about DOwn syndrome - you can contact the Down syndrome association of the UK - they are very helpful.

My story is that at 20 weeks and a referral to the FMC to see a fetal cardiologist - our dd1 was diagnosed with a complete avsd. We were also told if she was born without Down syndrome it would be very very rare. We chose not to have an amnio as it would not make a difference for us. This was our daughter and she would be born. Both of us had examples in our lives of families who had members with down syndrome and were doing fine. We have since learnt on paper our chance was around 1 in 5. She was born almost 6 years ago with down syndrome. At 8 weeks old she underwent two open heart surgeries and after a rocky recovery period has gone from strength to strength.

She is currently attending a mainstream school 3 ( soon to be 4) days a week and attends a special ed unit 2 ( soon to be 1) day a week. At mainstream - every child in her year knows her. In her class they fight to sit next to her, to have her work with them.

I have written loads about dd1. There are tough times but they are far outweighed by the good times. Her sheer determination and amazing personality have won her many friends and admirers.

She is just gorgeous. She is an adored big sister ( from dd2 and 3).

I could rave forever about her ( and her sisters.) Think there are still some pics attached to my profile.

Personally I think tests are offered a little too routinely and women take them without thinking out fully the implications of what will happen when they get the result. I am a bit of an information freak in that I want to know what the test indicates, how reliable it is, how exactly it will be done and what the next step is. I am constantly amazed at people I come across who have tests because the doc/midwife/gp suggests it without fully realising the implications of the test. But that is my opinion.

Fwiw - people who have knowledge about and experience of people with down syndrome are more than 60% more likely to continue a pregnancy in which a diagnosis of down syndrome has been given.

The hardest thing about being dd1's mother - ignorance of others who cannot see past a label to the amazing person beneath. To those people who either believe that my daughter has no place in this world or should not have been born. To see those people who in 2008 have still not got the idea that people with special needs are just as valuable to this collective we call society.

hope that helps.

[eidsvold]

oops - sorry about the long message.

[TummyTrouble]

So much information Waitinggirl. I hope it all helps. I have found it fascinating. Remember, you are ONLY 35 and the risks of Downs and the various abnormalities are relatively low, you still have a much greater chance of having a perfectly healthy baby.

Also your scan came up fine, did they not give you a nuchal measurement at the time? At my 12 week scan, I was told the nuchal measurement, in my case it was off the chart (9.3). In the end I refused a CVS and amnio as babies with Down have a 1/3 chance of m/c anyway, before the intervention. My baby died at 16 weeks, she had Edwards.

I'm 40 now and 6 weeks pregnant and I am having an early scan in 2 weeks and a nuchal at 11. My risk of Downs is 1% and of Edwards 1%. I'm not fretting about it. I will take it one step at a time. My motivation is seeing my jumping bean, jump. Could you wangle it so you get the scan without having the blood tests? That's what I did when I was supposed to have a CVS. I saw the scan, but refused the nasty bit. All the best, but whatever you do, the chances of the baby being healthy are greater than not.

To Riven - I agree with you 110%, I only wish I had had the opportunity.

[snorris]

Have skimmed most of the thread so apologies if I repeat anything that has already been said .
When I was pregnant with dd4 (now 2.3) I was offered a nuchal scan as I was "of a certain age"-I was 34 at the time!! Dh and I had already decided we were not going to bother as we would not take testing any further ie amnio/CVS. When it came to it the sonographer asked if we were sure and we told her that if anything was obviously wrong we would want to know. As it happened the measurement was 3.1mm, giving a risk of 1:14 for DS. Other reasons were briefly mentioned inc heart conditions but we still refused further testing. At the 20 week anomaly scan nothing was found amiss and we carried on (although with the possibility of "problems" at the back of our minds). As it happened dd4 became very ill at 12 days old and was found to have a significant heart condition. This would not have been detected by invasive testing and I believe it would have been hard to detect via scanning (although with hindsight maybe we should have been offered a cardiac scan as a precaution??)

I am now 12 weeks pregnant and have recently had my scan. I opted for the nuchal scan and blood tests more to prepare myself "just in case". As it happened the scan showed a measurement of 2mm and I haven't had the results of the bloods,but as the hospital told me that I would hear by the end of Thursday if I was high risk,I'm assuming that the risks are lower this time.

Personally I do feel a lot is made of the risks of Downs Syndrome etc when there can be other reasons for a large measurement, not all of which will be picked up by amnio/CVS.