Down syndrome?

[hayz21]

Hi all. i'm new to this site. I am almost 20weeks pregnant with my 2nd child. My 12 week blood results came back showing that baby is high risk of having DS. I turned down an Amnio as i am continuing the pregnancy either way and don't want to risk miscarriage. I was extremely upset for a couple of weeks but have now came to terms with what may be. I have my 20week scan in less than a week and may or may not find out for definite. I'd just like to speak to other people going through the same or who have already been there so i can get a little support and also support others myself who are having a hard time with the same circumstances.hope to hear from people soon.xx

 

[carolm]

Hi

I had very high risk at 1:35, i decided to do the same and not proceed any further with testing.

I just had my 20 week scan and everything seemed on track measurement wise so we'll just have to wait and see.

 

[hayz21]

thanks for response. It's nice to hear from someone in the same boat as me. my results were 1 in 47 so like u it is very high. I am a little upset that being high risk means giving birth on the labour ward as i was hoping to be in a birthing centre or at home. I know the hospital staff know whats best for mum and baby but i had my first child 10 years ago in the local hospital on the labour ward and the way the staff treated me, disgusted me. I was only 17. there was 5 midwifes on duty and 8 people giving birth. i was left alone for most of it so i panic that i will receive similar care again. Fingers crossed your baby is born 100% healthy but if not, u will have a special blessing to look after x

 

[carolm]

Hi

My thinking is that i'll just deal with it come what may - i'll love this baby whatever so it made sense to us to leave it to nature.

I think im a bit limited in what I can do anyway because im being induced so hospital it is for me but then again, to be honest, i would prefer that - im a first time mum at 43 so I want to be reassured that im in the right place if I need help.

I'll keep my fingers crossed for you - at the 20 week scan I paid quite a bit of attention to all the measurements etc so that may put your mind at ease a bit more xx

 

[precious_cargo]

Our risk was 1:15 after having a nt measurement of 4.2 at 12 week scan. We had extra scans with fetal consultant I didnt have amnio or cvs. At 20 weeks consultant could t say she did rule out edwards and patals but she couldnt say for downs. We had a really tough time and towards the end I became very anxious. I had a textbook natural delivery and Ella was born without downs syndrome she has a sacral dimple but it hasnt seemed to effect her in any way! Feel free to pm me x

 

[hayz21]

Glad u r all getting on well everything came back good on 20week scan.i will b having a little girl. Xx

 

[redbear]

Glad u r all getting on well everything came back good on 20week scan.i will b having a little girl. Xx

Glad to hear and congratulations little girls are fab xx

 

[Mackmummy]

I knew I would come back high risk purely because of my age (40 in a few months) so I had the private test, it's just a normal blood test and is 99.9% accurate. Not many places offer it but it put my mind at rest, like you we were keeping either way but I wanted to ensure I was prepared and educated to care for baby, the test also tests four other disorders that are life threatening so it really helped me relax. Good luck xxx

 

[vicky78]

Mackmummy, can I ask how much you paid? I know when I look it up, they are £500 plus, this is not in my budget at the moment, I might change my mind when I get my results after this week's blood test

 

[Mackmummy]

Mackmummy, can I ask how much you paid? I know when I look it up, they are £500 plus, this is not in my budget at the moment, I might change my mind when I get my results after this week's blood test

The one I had was called NIPT and it cost £600. I do know there are cheaper versions that may not test for everything but are highly accurate for about £200. One is called NIFT and I can't remember the other! But will have a look see if I can find it.

Panaorama! But I don't know where does them in this country

 

[vicky78]

Thank you mackmummy

 

[Lynds77]

Same boat as you ladies. 1:125 chance (am 37 in a few weeks), turned down amnio, 20wk scan looked ok and now just waiting for my growth scans to start at 28wks. They said I would get scans every 2-4 weeks from then as slow growth could be an indicator there is problems.

I cant help worrying though. I barely feel this baby and have convinced myself its because there is something wrong...... and nothing to do with my anterior placenta.

Just have to hope and wait x

 

[mishi]

Mackmummy, can I ask how much you paid? I know when I look it up, they are £500 plus, this is not in my budget at the moment, I might change my mind when I get my results after this week's blood test

The one I had was called NIPT and it cost £600. I do know there are cheaper versions that may not test for everything but are highly accurate for about £200. One is called NIFT and I can't remember the other! But will have a look see if I can find it.

Panaorama! But I don't know where does them in this country

The other one is the Harmony test, we had this as I knew I would come back high risk due to my age too (41).

It cost £500, £120 of that was for the accompanying scan.

xxxx

 

[Niknak]

I am doing the Harmony test at the Fetal medical Centre in London, its £400 for the package if you have your bloods done at 10 weeks, otherwise after that the package goes up to £500. This test wasn't on offer with my DS 3 years ago but I didn't have great results from my 12 week scan 1:120ish and when I was re-scanned in London they gave me odds of 1:17,000 their equipment was much better than the NHS scanners and they had so much more time to scan me that I really think a second opinion from a specialist is worth it if you can, good luck x

 

[Mum2Many]

niknak, I'm going to the same place at 10+4 weeks - how was your experience?

 

[Applecrumble]

Hi gilrs, me and my Oh have decided to go for blood test we are thinking about going thisismy..london clinic for £295... The test is Nifty..can i ask why you girls are going for Harmony as opposed to Nifty?

My sister had a downs pregnancy last year and decided to terminate. She has fallen pregnant again and doctors advised her to go for harmony. (Only thing on offer in bristol).

 

[Mum2Many]

I'm going for the Harmony test because it's what Professor Kypros Nicolaides suggests and offers. He's a world expert and I trust him to help us to be as sure as possible if there is or isn't a problem and to know the best options available if there is a problem.

It strikes me though that all the new tests are much of a muchness. They all offer roughly the same testing, so I suspect one is just as good as the other really.

 

[Niknak]

My experience when I went 3 years ago was amazing, they were brilliant - my son was really awkward and didn't play the game with lying in the right position/still and they were lovely and gave me so much time, they weren't in a hurry at all which was the total opposite to my Nhs experience. They really filled me with confidence...
In terms of the harmony testing, I'm going next thursday so I will keep you posted!

 

[Applecrumble]

Ladies, I just booked my Nifty test for 18th May will be 12weeks...

 

[fao]

Just thought I would add, its better to work out your percentage risk to put it in perspective. I was considered high risk at 1:142 but as a % it was less than 1% chance. So more than 99% chance that baby is not DS.
This might help to put your minds at rest a bit if you are spooked by the high risk label.