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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

blood tests show 1 in 120 risk of Downs

25 replies

oxocube · 08/12/2009 11:05

My brother and SIS are expecting their second baby. She is 17 weeks and they just got news last night that the risk of Downs Syndrome is higher than average and have been recommended an amnio. They are v upset and unsure what to do and there is a definite possibility that they will continue with the pregnancy regardless of the result. My DB is torn between wanting to know so they can make a definite decision and/or be prepared and the risk of M/C with an amnio. I had an amnio with DC 3 and had no complications or bleeding.

Does anyone know whether this 1 in 120 risk is very high? Any more experiences of amnio? The amnio is booked for tomorrow but they haven't yet decided whether to follow it through. Any advice welcome thanks.

OP posts:

RnB · 08/12/2009 11:07

poor things

apparently any higher than 1:150 is considered high. Must be a tough decision to make

midori1999 · 08/12/2009 11:34

Higher than 1 in 250 is considered high. However, it is really important to remember that it is a screening test, and works out the probable risk, as opposed to the actual risk of having a baby with Downs.

My third son has Downs and I didn't know until after the birth, despite having had screening tests. I am glad I didn't know, as through ignorance, I have to admit I might have terminated. Him having downs doesn't affect our family negatively at all and I wouldn't change him for the world.

Whatever your borther and sister in law decide, the hospital shoul dbe able to put them in touch with parents of children with Downs so they have someone to talk to and can meet a/some families. If this isn't possible and they want to contact me, let me know. (assuming there is a PM function here? Sorry, I am new..)

Original poster

oxocube · 08/12/2009 12:34

Thanks so much for the replies. Just had a mail from my brother who has spoken to the dr who performs the amnios at their hospital. They have decided to go ahead with the test tomorrow, having decided that whatever the news, the would rather know and be prepared.

OP posts:

RnB · 08/12/2009 14:03

the best of luck to them x

extremelychocolateymilkroll · 08/12/2009 14:30

Are they anywhere near London? Fetal Medicine Centre www.fetalmedicine.com/fmc/ does scans which are more detailed than the ones offered on the NHS.

PeasPlease · 08/12/2009 14:45

Tell them to consider a nuchal fold scan as long as she is less than 14 weeks. You have to pay but there is no risk of miscarriage.

SmacOnTheLipsUnderTheMistletoe · 08/12/2009 18:46

this website is very good for getting information and there is a helpline too if your brother and SIL need to talk to someone.
I had 1:55 result from bloods and decided that I needed to know one way or another, the uncertainty would have driven me mad and I would have worried for the rest of the pregnancy. 1:120 although considered 'high' really, really isn't a high result and if it has come from blood only and not a combined test then I was told that the blood test (triple test) is notoriously unreliable. I wouldn't choose to have the triple test again because of the stress it caused me however I would have an amnio again if necessary.
The amnio was a little uncomfortable but nothing worse than that. The waiting for the results however was very stressful and I felt very emotional.
Tell your SIL to rest up afterwards as well. Not bed rest but no heavy lifting and to take it easy for 2 days.

burstingtotalkaboutit · 08/12/2009 18:49

if they possibly can they should get prof nicolaides at the fetal medicine centre in harley st to do it. he used to do it all day wednesday. he has an unbelievably better rate of success with amnio then almost anyone else in the country. also their screening is really really good.

it really is worth getting him to do it.

sarah293 · 08/12/2009 19:06

This reply has been deleted

Message withdrawn

bramblebooks · 08/12/2009 19:13

I had a slightly higher risk. I agonised over it and insisted on a detailed scan. I can't explain it, but had a 'white light' experience on the table - I was due to have an amnio after the scan. markers on the scan were good, so I declined the amnio as I was concerned about m/c. Our little boy was born 'neurotypical'.

I thought about it, and I had the same chance as it being the one gorgeous child with Down syndrome out of the 120 children in the school my son attends. This little girls is a joy and delight and lights up my life - she's the daughter of a dear friend.

All the best.

MollieO · 08/12/2009 19:22

I had that risk and went for the combined test at the Fetal Medicine Centre. I can't remember what the odds they gave were other than they were the same as a 20 yr old (I was late 30s). I remember my dp (who became ex on ds's arrival) said it was a shame the outside of my body didn't match my insides .

If they are near striking distance of the FMC I would call them and get their advice. It will be too late for a nuchal fold scan but they are really excellent on advice and far better than my experience of the NHS (who on my 20 week scan told my GP my baby was dead).

Original poster

oxocube · 08/12/2009 19:43

Thanks everyone. They are in Newcastle so a long way from Harley Street! I'm just praying everything goes well for them. SIL had an ectopic pregnancy a few years ago so was delighted when she fell pg with their first baby and they are equally thrilled with the second. They had scan 5 days ago to find out the sex of the baby (a girl) and SIL has felt her kick so the baby has become very 'real' IYSWIM.

You are all so kind with your advice and positive messages.

OP posts:

ilovesprouts · 08/12/2009 19:46

mine was 1-250 and i was 38 ,dc is fine

Original poster

oxocube · 08/12/2009 19:58

Sis-in-law is only 35.

OP posts:

jaffacakeaddict · 08/12/2009 20:39

I had an amnio too at about the same stage. If she's not yet in maternity clothes I'd suggest that she might want to wear a pair of loose trousers. I remember thinking that I wanted my trousers to be as loose as possible.

Chynah · 08/12/2009 20:45

My risk was 1-12 I had a CVS and got the all clear.

jaabaar · 08/12/2009 21:13

I have been there... It is very very difficult!
In my first pregnancy I had a risk of 1:21 and a CVS came back positive.

In my second pregnancy I had a risk of 1:11 and the CVS came back all normal.

1:150 is not very high if you look at it the other way round. Out of 150 pregnancies ONE will be affected.

Sendinhg lots of strenght in this very difficult and stressful time.

G x

Original poster

oxocube · 11/12/2009 16:03

Thank you everyone. Brother and sister in law just heard - everything is fine with the baby so they were one of the lucky 1 in 119 . Thanks for all the support!

OP posts:

extremelychocolateymilkroll · 11/12/2009 16:48

Great news.

SmacOnTheLipsUnderTheMistletoe · 11/12/2009 21:40

that is great news, thanks for coming back to tell us!

ilovesprouts · 13/12/2009 18:55

thats good news

sue06 · 11/05/2020 21:28

My daughter age 33 had a 1 in 120 downs risk she had amnio and the baby is fine thank goodness , cause her brother has, hes now 36 and living independently and doing really good.

Sheera1 · 11/05/2020 22:56

@midori1999 Hello. I am mum to my wonderful son with autism. So I have some experience of additional needs and I agree you would just do anything and I wouldn't change him for the world. Can I ask what tests you had? Was it the NHS nuchal one. X

Sheera1 · 11/05/2020 22:58

Hi sorry older mum here. Is downs syndrome not 1 in 100 pregnancies over 40 years old so would the result not automatically be 1 in 100? Am I being daft? Xxx

NicNac100 · 12/05/2020 09:53

@Sheera - I believe straight off they calculate it on maternal age - so each year older you are, the smaller the fraction is - I'm 39 so initially my number was not looking good - but then they do the blood tests and calculate the fluid on the back of the baby's neck at the 12/13 weeks scan and couple that with your age related number and get a different number - so mine was originally 1 in 100 or something due to maternal age alone, then after the blood test and fluid test came back 1 in 360 or something like that x

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