Im 10 + 4 and am very confussed about Down's syndrome testing. I've just come off the phone to my midwife who spoke to me like something on her shoe. Im not stupid but she made me feel pathetic. All i wanted to know was what tests were available as none of the information is very clear.

From what i can gather, we get a triple blood test at 16 weeks but if we want the nuchal scan we have to go private and it should be done by 11 weeks-which i nearly am.

I don't know what im asking really, does this sound right? I don't even know if i want the scan it would just be for peace of mind more than anything. Do most women have this scan? Is it a major thing to miss out on?

I can't stop crying. Im just so worried about pip, no-one's even confirmed im actually pregnant, feeling very alone and to top it off i now think my mid-wifes a complete b*tch! She said i need to do some research on the internet-she doesn't even know i've got a computer!x

Hiya pixibob

First question how old are you and your partner?
I'm 23 and never bothered with either the nuchal fold scan or the blood tests as I have no history of Downs in the family nor does my husband.
I don't personally think that the tests give any real piece of mind as they give you a percentage rather than a yes or no and they often get miss reads.
A good example of this is my friend and her partner where told that their baby had a stupidly high chance of having Spina bifida (sp?)(something they test for with the blood tests) and had to go in for a scan the next week to confirm this.
So she got really worried to the point that she couldn't keep anything down and got really quite ill only to be told at the scan that everything was fine and that the baby was totally healthy.

It is totally up to you but I think you really need to weigh up the pro's and con's of this test as it can cost quite a lot.
As for the scan I had a private dating scan done and booked it ages in advance but was told that most of their clients only booked a week in advance.

I hope that has helped a bit and sorry it turned into a bit of a rant along the way

Good luck what ever you decide to do

Lucie xx

P.S you might find that you have a community of midwifes rather than one like I do and so far I have found all of them to be lovely so don't worry about one being a bit short with you.

Hi
Sorry your midwife wasnt very helpful, hopefully tho like Lucie said you'll have a team and see different ones...

As for the scan we got offered one at 12 weeks and had it, I'm 33 and I wanted the piece of mind as did OH... They give you an odds result I think mine was something like 1:5500 chance... if its less than 1:250 they call you back and offer you an amnio...

Its all personal but Im glad I had mine as it took away that worry... they also test for other chromosonal problems...

A friend had a private one and I think it was around £100...

They can do them up until 13 weeks I thought...

Hope that helps

Jo

25+2

Thankyou both for your replies-you've really helped me. I've calmed down now and had a chat with hubbie and my mother in law (she's got 9 grandchildren so knows all about the tests etc). I know it's completely our descision but she said that my sister in law only had the triple blood test and my other in-law didn't have any.

We've decided to just have the triple test. Im 27 and hubbie is 30 so age is on our side and i don't think you ever find peace of mind as a mummy, there's always something to worry about so while it would be nice to find out if we were low risk, i'd still be thinking about everything else that could go wrong! We'll wait until 16 weeks and cross that bridge when we get to it.

Thanks again xx

Hiya!

Im 23 years old and 16+5 and had the blood tests done on friday. My big cousin has downs syndrome so i wanted to have the tests done for peace of mind. My aunty was only 24 when she had my cousin, which is very rare and the midwife said there's a very low chance our baby will have it, but we decided to have the blood tests anyway, so just waiting on the letter confirming everything is fine. Results take a few weeks, so just having to wait patiently :(

Im sure everything will be fine and its entirely up to you if you want the tests.
Take Care xx

Hey hun

I didnt have the nuchal fold scan either i just had the standard 12 weeks scan.

At your age i would just go for the triple tests at 16 weeks.. and like the other girls said there is a long wait for the results (3 weeks for mine) but its worth it for peace of mind!

Try not to worry about your pip am sure its just fine and take the midwifes comments with a pinch of salt you probably will never meet her as a lot of us have different midwifes everytime x x x x

Thanks Mrs Johnstone, lots of luck with your test results-all this waiting is so difficult! Im waiting for the 12 week scan but i know it's just one thing after another until we give birth! Just trying to enjoy being pregnant amongst it all!

Lots of love xx

Thanks Mrs Johnstone, lots of luck with your test results-all this waiting is so difficult! Im waiting for the 12 week scan but i know it's just one thing after another until we give birth! Just trying to enjoy being pregnant amongst it all!

Lots of love xx

Hi Pixiebob...

Well your midwife sounds really unsupportive and unpleasant!

If you do still want some info on Downs testing then hopefully this will help. The risk of Downs increases with age and if you have previously had a child with Downs. Most women are offered the opportunity for a screening for Downs early in pregnancy. At about 12-16 weeks you may be offered the triple test - this looks for certain hormones in your blood as an indicator of Downs. In addition you may be offered a nuchal fold scan (around 12 weeks) where the thickness of skin at the back of the baby's neck is measured by a sonographer during an ultrasound scan. The results of these tests come back as a % of risk.... so 1 in 12,000 risk compared to say 1 in 250. These tests only indicate your level of risk - they are not absolute at determining if your baby has Downs.

If the tests do come back with a high risk score you will be advised that your risk score was high and offered other tests if you want them. This will be either amniocentisis or CVS - both take material generated from the baby so it has the baby's DNA - either from the placenta or amniotic fluid around the baby (I think). This material is then tested to give you an absolute yes or no answer as to whether your baby has Downs. As both these tests carry a risk of miscarriage they are only recommended / offered if you are high risk from the first set of tests.

HTH
For more info go to:
http://www.bbc.co.uk/health/conditions/downssyndrome1.shtml

I dont know but i never wanted any of the check,
Me and martin both feel that no matter what the results it wouldnt make a difrence as to weather or not we continue with the pregnancy, and also it wouldnt make us love the little one any less. i also know of a lot of ppl who have had the tests been told there was lots of problems with the baby and had docs try to convince them that a terminations was best, they freaked out all through there pregnancy only to find when they had there little one that there was nothing wrong with them x

Thankyou again for the replies, they've really helped. Its so difficult when you can't ask your friends for advice, we want to wait until 12 weeks before we tell people.

Well, we've been all around the houses. I booked the nuchal scan today and have now decided to cancel it! I'm finding it really stressful so the triple test will be stress enough xx

Hi Pixiebob

I am so sorry to come in so late on this but I would like to share my story with you.

I didn't know anything about Downs Testing until I was 15 weeks (I am now 21 weeks). In fact when I was 11 weeks I had a dating scan which was on a Friday and the next day I had booked myself in for a private scan so thinking 'Well I have just had a scan and all is ok' I cancelled the private scan. A few weeks later I saw my MW for a routine appointment and she said 'Next week I shall test you for Downs'. I had no idea what that meant and so I called my sister. Her daughter is a year old now. My sister explained that it's a risk assessment of a woman's predisposition to have a baby with Downs. I totally freaked out. For a whole week I sobbed and sobbed, researched the internet day and night and harassed everyone with my concerns.

The following week I was preparing for my test and I sat on my sofa and broke my heart. My cat, who was previously abused by her former female owner and very rarely comes near me, came and sat on the sofa and patted my arm, almost like saying 'It's going to be ok'. That calmed me down enough to walk the 40 minutes to the clinic.
When I got there my MW was busy with someone else so I saw a Trainee MW. She was lovely. I poured out my concerns to her and she said that at my age (29 at the time - I turned 30 a couple of weeks ago) the risk was low. Still I had heard of women as young as 19 having Downs babies. I went away feeling pretty worried again.

Later in that week I was chatting to my sister and she had her test done privately. She said that my niece came back as 1 in 28,000 for Downs and my sister said the man who did the test told her that every woman's risk assessment is based on height, age, weight, previous medical history and previous births. He told her that these tests are very unreliable and that they are only 70% accurate at best.
For some reason this calmed me. I don't know why. On Thursday last week I had a 2nd scan with a Specialist in Fetal Medicine as my daughter has a 2 vessel cord. She's fine and dandy and he has no concerns but he went through the scan again and said 'neck fine'. My hubby later said that when the Dr said that his heart skipped a beat as a thick neck is a sign of Downs and my baby's neck wasn't thick.

What I am saying is that my sister had her scan done at 11 weeks, to her this was a suitable time for the foetal development stage as unfortunately she felt that she and her husband wouldn't be able to care for a Downs child and if the baby has Downs then she would terminate her pregnancy. Thankfully my niece is ok but I would say to you if I may, you are at a pivotal stage in your pregnancy in terms of finding out if your baby is ok. The NHS test is done at 15 weeks - 24 weeks and this will test for not only Downs but for all sorts of other terrible disorders. If the test comes back as postive or high risk you and your partner face having to make a decision that will change your life at a stage in your pregnancy when your baby is developing and has his/her sex organs. If you have the nuchal scan done now you are still early in your pregnancy to make any decisions you feel necessary and when you reach 15 weeks and your MW offers you the Downs Test you can say 'No thanks' and that's one hurdle behind you.

I know you are scared, I was a wreck whilst I waited for my results. I couldn't eat or sleep and my family said I was so upset it scared them. My brother said at that time I needed to calm down as I am not helping anyone by being so negative.

Why don't you go for the nuchal scan? Do it now and get it over with.

800,000 babies are born in the UK every year and of those 5000 will have Downs. That is pretty low risk to me.

I know you are scared, I completely understand, but instead of worrying yourself more have the private scan, get the results and then you can get on with your pregnancy.

xxx

[Modified by: charlotten on August 21, 2008 08:43 AM]

can i just add AGAIN!! my sister has downs, she lives independently in a flat with her fiance and works part time as a receptionist for one of the best solicitors in town, she also candy stripes at the hospital on a saturday. she's due to get married in july of next year and has thus organised most of it herself! thank god my mother didnt decide to "terminate" her.

Artygal, it is great that your sister has been able to lead such an independent life, but I also understand why the ladies on here are worried about it (especially as there are varying degrees of disability with downs). Having grown up with a downs sister I'm sure your fully aware of it all but most of us are not and so find it all very scary.

We have ladies and gents who come in from a downs charity and do office work in our building and we have so far had 2 people who came in. The first lady was very independent and really wanted to move out of her parents house and get a boyfriend (she is 25) and the second person (a young man) has a much more serious form of downs and will never be able to be fully independent and will always need care.

Now personally (and this will make me sound very selfish, well so be it) if I was diagnosed, after every test going including a 4d scan, of having a high chance of having a child with downs I would seriously consider what my options are as I just don't feel I am a strong enough person to deal with that diagnosis (or any diagnosis for that matter).