nuchal fold, blood tests and just general support needed

[arwenevenstar]

Hi,

I am currently 15 weeks pregnant with my third child and living in Belgium. Over here they not only do a nuchal fold but also take and test your blood for Down's syndrome. My nuchal fold was fine but my blood has come back putting me in a "higher risk" category.

We have decided not to go with an amnio as my risk of carrying a Down's child is less than the risk of miscarriage and we don't wish to terminate whatever the outcome.

However, this is mainly for parents with children that were born with disablities, what other things should I be looking out for in future scans or during my pregnancy ie: particulalry quiet baby, small growth?

And a silly question really, did any of you have an "inkling" something was wrong? I read somewhere that sometimes havuing a lot of amniotic fluid can mean that the baby has Down's.

Please understand we are fine about this, just I suppose trying to see if there is anything else we should be aware of.

Thanks for all your help

Friends of our had a pregnancy with a lot of amniotic fluid, and was tested but baby was actually fine. There is research about the presence of the nasal bone in the 12 week scan being a positive sign. I always looked for this with mine.

I'm not sure any test is conclusive, as someone else I know of (friend of a good friend) had low risk results, and had a girl with downs, and they didn't actually tell her until 2 weeks after the birth.

Sorry I have no experience with disabilities but I would say go with how you feel if you feel concerned about something get advice Wishing you all the best

Please dont worry and dont look for things either. My daughter has special needs that only became aparent when she started developing and I cant say there were any pointers during my pregnancy that this would be the case. Try to relax and enjoy your pregnancy and rememeber the risks are minimal and everything will most likely be fine. More likely to be fine than not

arwenevenstar, there are some regular Mumsnetters who can give you lots of very positive advice about Down's Syndrome. Hopefully they will see your post soon.
I can just say like Smellymelly that excess amniotic fluid, while it usually rings warning bells with the midwives, does not always mean a problem for the baby. I had polyhydramnios in two pregnancies and both babies were fine.
I think the other thing that your healthcare team may well check even more carefully than usual is the heart of your baby at the 20 week scan. Some babies with Down's also have heart problems that can be picked up around that time. Then they will be prepared to give your baby appropriate care when he/she is born.
If you don't get a 20 week scan in Belgium for whatever reason you might want to consider arranging to have one done in the UK. The Harris Birthright Centre do a highly specialised one for "at risk" pregnancies called a fetal echocardiogram.
Although my risk wasn't raised after my nuchal, my third baby was born when I was 40 and we declined the offer of amnio for the same reasons as you. Good luck with the rest of your pregnancy.

As far as I know the nuchal fold test is a better indicator and the bloods notoriously unreliable on this subject so I would anyway not be too worried if your scan result was encouraging.

Hi, I have just been through this and had a CVS last week and go the results that everything is fine on Friday.

The nuchal fold result is what you should go by it is a better indicator than the bloods.

Also make sure as someone has sadi that the nose bone is visible - clearly discernable is the phrase they use I think - this although is not looked on as a good indicator is used at Kings as a pointer - the sonograpeher there said that it is definately one of the things they look for.

The heart is also an indicator - although not all children with DS have heart problems so really the only way you would know is through invasive testing.

What were the ratios that you were given - mine were higher than the risk of miscarraige in both pregnancies but I had the CVS not only because of this but because I had to know.

I hope everything goes well but maybe you should read some of Thomcats postings - her daughter has DS and she really is inspirational inher outlook (although she will deny it!!)

My m/w strongly advised me against having nuchal fold and bloods together because they often contradict each other and the bloods are not particularly accurate.

ditto piglit

Hi arwenevenstar,
Hope I can help, my little girl, Lottie, now 2 and a half has Down's syndrome
First off congratulations.
Secondly I'd like to say that if at any point you'd like to call me at home about anything then please feel free, or if you would like to email me privatley then please do so, just contact me through mumsnet, see contact another talker.

So, to answer your questions;

• no I had no inkling whatsoever.
• I had a really healthy wonderful pregnancy. Felt a bit sick in the mornings now and again but nothing really and just glowed and loved every second of it. She moved around quite a bit and was more active at certain times of day. D could feel her kick and punch as we lay in bed together. All tests put me in low risk group and she was the perfect feutus, lay the right way, gained weight as she should etc. She was 10 days late, a healthy 7lb 7oz and was born with no heart defects and generally a healthy and very happy little girl.

She has never caused us a moments concern and is the absolute light and joy of our lives. As I've said many times before she makes being a parent, easy and wonderful and it's an honour and a privalage to be her mum. We get an enormous amount out of being her parents, and makes us proud constantly. She is adored by all who meet her and she is incredibly sociable and fun to be around.

Her playgroup today informed me that she is so popular they have to limit the amount of kids who play with her at anyone time! She is the smallest and youngest there so I guess they all love that about her!

I'm so pleased that you are okay with the possibility that your baby could be born with DS. There are times that you feel a bit sad and scared about the future, but there are no guarantees in life as far as child are concerned especially and the good time far outweigh the bad.

I'm always here if you have any more questions etc and like I said feel free to contact me if you feel you would like a one on one private conversation about anything.

Lots of love and may I wish you a happy, healthy pregnancy.

TC xx

Thanks all for your words of advice and wisdom. Like I said we are not concerned about the possiblitly of Down's but more a little concerned about any other problems that can run along side.
I had heard that the bloods were only 60% accurate, but it is nice to hear that reassured from you guys here.

I have to wait until my 22 week scan to see if there are any other problems ie heart defects etc, but I will be crossing my fingers!

Thanks again and I am really pleased to have found this site!

just to follow up what TC said - I too have a little one with Down's syndrome and until the 20 week scan where they picked up a heart defect - everything was fine... even after they picked up the heart defect - fine. Her heart defect was very common in children with Down's syndrome - she had surgery at 8 weeks old and now has been given the all clear - ie her heart is just like a 'normal'one. I too refused an amnio for variuos reasons but they gave me a very detailed fetal anomaly scan and there was one soft marker - her head size - everything else they measured and checked was fine.

In my case - I did not have lots of amniotic fluid and so personally think that is not a reliable guide.

Dd was not quiet - she was a squirmer - especially flipflops from side to side and incredibly unco-operative during scans prefering to move so much that it used to annoy the sonographers.

Now - she will be 2 in August and to look at her you would not know she had a tough start in life. SHe attends mainstream nursery full time and both dh and I can't imagine not having her....

I also think that tests that are only 60% accurate need to be put into perspective - i did not have bloods either pregnancy ( now 4 months pregnant and refusing bloods) simply because statistically they do not make sense in terms of reliability and that stress is not needed.

Hope that helps.