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Anyone had v low risk nuchal, but gone on to have a child with DS?

(19 Posts)
Markandkark Mon 05-Sep-11 15:55:46

I was wondering if anyone had had no forewarning at all about their child having DS, due to very low risk factor results from nuchal/combined tests?
I have a very low risk (1:11,000) and scans have shown no anomalies, but I still have a feeling that something isn't quite right.
If you did go on to have a child with DS how did you cope with the news, and was support and information made available to you?

mousymouse Mon 05-Sep-11 15:58:19

not me, but a friend had a 1:2000 calculated risk (fold measurement and blood test) and has a delightful ds daughter.
she didn't know beforehand and didn't have any strange feelings either. scans also were fine.

FemaleYouNicked Mon 05-Sep-11 16:09:20

DS is not the only issue that can affect your baby. How pregnant are you? Have you had the anomaly scan? Have you been pregnant before?

thisisyesterday Mon 05-Sep-11 16:11:37

not sure if you have ever come across kelle hampton's blog, but she gave birth to her second child, Nella, with no idea that she had down syndrome

the link there is to Nella's birth story. which might make you cry!

anyway, if you read even just the birth story and then some of her more recent posts you will see that Nella has brought nothing but the joy of a new baby and a new outlook on life for their family... it's a great blog

EggletinaClock Mon 05-Sep-11 18:03:13

I had a totally normal nuchal fold scan but my baby had Edward's syndrome and it was only discovered at the 20 week scan.

RandomMess Mon 05-Sep-11 18:05:15

Had friends who this happened to didn't know until she was born.

FemaleYouNicked Mon 05-Sep-11 18:50:42

<hug> Eggletina what a shock for you.

EggletinaClock Mon 05-Sep-11 20:01:15

It was the worst thing that's ever happened to me and sadly I'm by no means the only one. However, I'd rather have found out at 20 weeks than at full term as it is a lethal condition. My experience illustrates that screening isn't just for Down's Syndrome and there are other lethal syndromes and conditions where you are left with very little choice over what to do.

RandomMess Mon 05-Sep-11 20:07:00

Just popped back to say my friends were intially devasted that their last child had DS, very disappointed. Obviously in time (weeks rather than months) they became as besotted with her as their other dc. She had many health problems and it was a very difficult first year in many ways.

FemaleYouNicked Tue 06-Sep-11 11:48:12

Eggletina I've had two cvs due to very high odds afer the scans (less than 1:10 both times) and it was Edwards I was the most scared about because of it's fatality statistics. My heart goes out to you.

Bizarrely it was my first DC, who had fine scans who has SN, though nothing too serious.

EggletinaClock Tue 06-Sep-11 13:35:29

Thanks FYN. It's true that scans can only show so much and a large proportion of disabilities are as a result of complications during labour and birth. I feel that the whole business is far riskier than people really like to acknowledge - but I would say that I suppose!

FemaleYouNicked Tue 06-Sep-11 14:25:40

I completely agree, Eggletina. Also, people demand reassurances when there are no guarantees. My daughter's SN were caused by the birth. Have you since had a baby?

EggletinaClock Tue 06-Sep-11 15:40:09

No, I'm desperately trying to conceive again, I have one child already though. One of my close friend's child has potential problems due to a mismanaged birth, they don't know yet. It's a tricky one as she feels very angry that things went wrong and there is someone to blame. I can't blame anyone for what happened to me, it was just very bad luck. I think that's easier in some ways.

FemaleYouNicked Tue 06-Sep-11 17:25:54

Yep, it can be an awful roll of the cosmic dice but then, so can accidents. Best of luck, sending all the vibes your way, i hope you concieve very soon.

daisylulu Tue 06-Sep-11 22:46:21

sorry you are feeling that way OP. How pg are you and why exactly do you feel that way? I would urge you to listen to your instinct if something does not feel quite right. for me with my first pregnancy i felt something was not right despite a 1 in 23000 nuchal risk - sadly, completely unrelated to DS, lethal abnormalities were discovered at my 21 week scan. Although please remember this is extremely rare and a lot of women have bad worried thoughts (I do think it's a natural part of pg to some extent). The reason I'm sharing my story is not to scare, because the chances of anything being wrong are very very slim, however I always regretted not getting checked sooner and was subsequently told by the bereavement midwife that ishould have acted upon my concerns. They really don't mind and like to give women reassurance - hopefully a quick call in with your day assessment unit (depending on how pg you are) will give you priceless reassurance.

MyangelAva Wed 07-Sep-11 19:56:35

I just wanted to echo what Eggletina has already mentioned. My baby Ava, had Edwards Syndome with a low Nuchal fold measurement (1.7) and risk factor of 1:190000. It obviously does have it's limitations but we discovered problems at the anomaly scans and terminated upon diagnosis at 26 weeks. Looking back, I think I was a bit more concerned during that pregnancy that something felt different, although it may be hindsight! Good luck x

devientenigma Wed 14-Sep-11 16:43:27

I was low risk for the blood test so no further testing considered. My ds was born with down syndrome found out after his heart condition. A lot of his heart condition was structural and nothing was picked up on a scan. He also had a thick neck, not seen on scan. I was under constant watch for other issues and more scans than normal. It took at least 7 month to come to terms with all this. No support or information was given, however it was 10 year ago. HTH and feel free to ask anything.

devientenigma Wed 14-Sep-11 16:46:05

big hugs to all those who have went through Edward syndrome. It's heart breaking!! I have been through this also, found out at a 20 week scan also.

glimmer Tue 20-Sep-11 20:08:15

I had relative low chances for DS (1:6000), Edwards & Patau (1:13000), but DS has another genetic disorder and heart defect, which was not picked up by scans. I regretted not having had invasive testing, since it would have given me some control over the situation in the sense that I would have had choice rather than found out later. I had massive issues accepting it, but finally have gotten around those. I mean you don't love them less, it's just that you and your family faces a very different future, financial demands, etc.

But: The ones responding here are the ones, who were the 1 in xxxx, because we are the ones returning to these threads, so you get a biased response.

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