should i have my nuchal scan?

hi i have a nuchal scan booked privatly for monday the 4th of feb, my scan was fine and baby is right size for dates but last year i lost my son to a rare genetic disorder trisomy 18/edwards syndrome.we have been brave enough to try again but scared ,now do i take the nuchal ?or just hope for the best the result will be 85% to 95% accurate but not sure that is enough and will i still be worrying. if i am high risk i won't have an amnio so am i just putting myself through more stress , i am so confused and my partner is too everytime we change our minds the other agrees so not much use to each other!! we disagree on the outcome of a positive result as my partner believes in quality of life i know what he means but i've just lost my baby and don't want to loose another even if it was downs, and theres always that 1% chance with an amnio that they are wrong either way and my risk of a trisomy 18 baby was 1% and i had one!so i no longer believe statistics !even if we got a good result i wouldn't trust it so is there any point?

maybe it's just a self protective thing who knows?

if any of you have been in a similar situation i would love to hear from you as i feel so lost and time is running out!along with my patience i'm driving myself mad !!lol!please save me!

hope to hear from you soon luv amanda xxx

Hi Amanda,

Its a very hard decision to make, especially as you have recently lost a baby. I'm led to believe that the nuchal fold scan is for downs only and, as you say, is only 85%. I think you are a couple of weeks further on from me. I'm having the Bart's test done, which is a 12 week blood test, the nuchal fold scan and then another blood test @ 15 weeks. It has a higher detection rate than the combined/triple/quadruple tests, but then I am 37! My OH and I both agree that if there is a problem, I will have an amnio.

I have a friend who, at the age of 40, got pregnant and did not have any tests, as she is religious and would not terminate regardless of the outcome. Some would argue that to know of a problem in advance give you the opportunity to a) come to terms with it, and b) make preparations and adjustments in order to cope with a special needs child.  

If you and you OH can't agree, may I suggest speaking to a genetic councillor who can give you a clearer idea of what raising a child with specific special needs will entail. Quality of life is important, not just for the child, but also you and your OH. There is much to think about.

On a lighter note, when we were discussing this issue with my MW, she was very reassuring when she said that even at my age, having a child with a chromosomal abnormality is very rare. I

t is very sad and terribly bad luck that you lost your child to Edwards, but I don't think that there is an increased risk of it happening again - unlike Downs. I really think you and your OH need to speak to a specialist about this - and very soon!

Hope this helps a little

Ciao...Kat xx 

thanks kat for your advice was so stressed out yesterday oh was concerned last night so we sorted things out! i explained that i was scared in case we had a high risk for downs had an amnio to know it comes pack positive and i would have to go against my wishes for an abortion but he said he had just overreacted as he was scared and so it's resolved ! i am now going for my test !!!! yippeee!!! can't wait for another chance to see baby and i feel more positive now.

i have all the info on genetics and we are at only a 1% increase of a genetic condition due to us having zak with edwards. there has only been one case of it happening twice when the parents have no chance of triggering the condition so we are hopeful.

like you say the quality of life is for the whole family and i have three other children 12,11 and 6 so a handful!
kids are good as gold and have been in a school with special needs children since the age of 3 so we all have some knowledge.

i guess your having the tests so you can prepare ? i don't think i'd have an amnio either unless i really need to know after a high risk .

i am 35 and 36 before the baby is born so we are roughly the same age.i am due on the 12th august and am 13 weeks on monday, how far along are you?
how are you feeling?

thanks for answering i appreciate it hope to speak to you soon take care amanda x

Hi Amanda,

I'm glad that you and OH have sorted things out. It is difficult and scary, especially after your previous experience.

Its deja vu for me today...I'm 11+0, although I was the same last week!! I had my scan on monday when I was 11+3, but they said that the size of 'Newt' showed I was only 10+3!!! I sort of knew I wasn't as far gone as my Dr & MW said cuz I have a 33/35 day cycle and ov'd on day 19! I have to go back to London on the 11th for another nuchal fold scan & bloods, as 'Newt' was slightly too small to use the measurements - although the were very good!

Alot of people probably won't understand this, but if I'm high risk for Downs, I will be having an amnio. if that shows positive, we will be, ehem, 'starting again' . My OH had meningitis 5 yrs ago which has left him with a neurological disorder. He really wouldn't be able to cope with a special needs child, as he himself is on alot of medication and lets say, 'has his moments'!!!!! His condition is sufficiently serious that he is being medically retired from his place of work - at the age of 46! Again, its an issue of quality of life for all concerned.

Have you had any sickness/nausea? I did have and it has eased, however I have been suffering from gastro-enteritis for the last week. I just can't seem to shake it! Whenever I eat anything, regardless of what it is, my stomach bloats up and all I wanna do is curl up to relieve the discomfort. It makes me afraid to eat! I also feel light-headed some of the time. If I'm no better by monday, I'll contact my Dr.

Hope to spk to u soon

Ciao...Kat xx 

hiya kat,
aw thanks ! your only just a little behind me then its hard though when they put your dates back even when you know where you are!i was right by a day cause i forgot about it being a leap year!!

i do understand why you would start again your circumstances are individual and with your oh and his neuralogical disorder it would be too tough for you all is that why you decided to test? i never judge anyones desicions we all have our reasons. you have been through enough already and when you have seen illness it alters your mind about suffering .

yeh i had sickness it went then back yesterday and today but oh said it's prob the stress !my son had gastroenteritis when little and he was so sick he still has a problem with food at 12 he is also selective mute and we have had such a hard time bringing him up he got teased a lot and although he is still a gentle and quiet child in the last year he has gained a lot of confidence and i s now ablre to talk to strangers and give presentations in class i am so proud of him and the struggle is now easing so although to look at him he seems "normal" he has had a topugh time so i know how a child with any difference has a hard time in this cruel world.i just wish he was selective mute at home he doesn't stop!lol!!!

your right to see the doctor next week if you
don't feel any better if its just to reasure yourself .

i speak to women who have lost babies to t18 and this morning one told us that she has a molar pregnancy so in for d+c tomorrow poor thing she has 3 kids but lost 3 one was stillborn one t18 now this and i thought what am i moaning about with this scan at least i have the chance so it gave me a kick up the bum i needed even though i feel so so sad for her.

are you having your nuchal on nhs?

anyway hope your feeling much better soon.luv amanda x

Hi Amanda,

Blimey, when you hear what other people have gone through it really does put thing in perspective, doesn't it. There but for the grace of a high power....!

Unfortunately, Devon doesn't offer nuchal fold scans on the NHS. I could have had the combined test done down here for £200, but it has a 4% false postive rate, so we decided to pay for the best test available, which is the Bart's test (aka Integrated Test). It costs £170, but we have to trek up to London for it. We think its definately worthwhile, as it has a 1% false postive, and looks at more markers therefore is more accurate in its risk assessment. Yes, OH condition is the primary reason for testing, although as u say, life is hard enough for 'normal' children in the world of today...and it won't get any easier!

Its fab that your son is doing so well. What an achievement! I hate giving presentations at the best of times, but schools & colleges now have presentations as a standard part to courses. Sometimes I think they put too much pressure on children. Many children don't want to be high flyers and are naturally shy until very much older. They develop at different rates and I dont think this is taken into consideration. 

Spk soon

Ciao...Kat xx