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Original poster

Very High Risk Downs and Terrified

45 replies

Cherrybug · 01/10/2010 09:43

Hi everyone,

I got the result of my bloods this week and have been told we have a 1 in 13 chance of a baby with downs. We have gone round in circles since, mostly in tears and finally agreed yesterday to have an amnio, booked for Monday next week. I am absolutely terrifed - of the procedure, of the risks and of the result. I have such an ominous feeling that it will come back positive as from the beginning of this pregnancy I've felt things werent quite right. My OH says that its just fear and worry and not real - my mind playing tricks on me, but I dont know, I have a healthy 2 1/2 year old and never felt like that with her pregnancy.

I'm so scared. Has anyone had an amnio and its turned out ok. Are they painful? I'm so worried about the risks involved. I know I couldnt get through the pregnancy if I didnt have it as I'm in constant turmoil, we both feel we need to know so we can make a subsequent informed choice. I feel that 1 in 13 is just so high and I'm 36 so age couldnt have thrown it off that much. I feel we are in a living nightmare where we have no control over anything and every single option is loaded with fear and worry. I just keep thinking that my bloods must have been really abnormal and that we should expect the worst :( Cherry

OP posts:
RememberToPlaywiththeKids · 06/10/2010 19:45

mowmi and peckhammummy can I ask if it was your first baby that you were given these risks?

I was given 1 in 5 and as baby has cardiac problems they are 99% sure baby has down's but we've opted not to have an amnio. This is DC3 so I'm wondering if this time that my bloods were 'wrong' but could still be ok or if some people just get bloods like that when they are pregnant IYSWIM Confused.

I'm suddenly wondering if there is a glimmer or 'hope' after all.

bluecardi · 06/10/2010 19:52

Cherrybug - it's an awful time waiting for the results. The day will come with the information - take things easy.

Original poster
Cherrybug · 07/10/2010 10:52

Hi Everyone,

Just had our phone call and it's good news, the baby does not have down syndrome. I cant believe it, I cried my eyes out down the phone. We both feel like we have been through a mangle. We get the rest of the results in 2 weeks but hospital said not to worry too much about this as it was downs that they were most concerned about. The placenta is low lying which they found in the scan so thats a bit of another worry and I'm high risk for obstetric cholestasis too but I just feel so thankful that our baby is ok i'm going to try and put everything else to the back of my mind for now and concentrate on looking after this wee one.

thanks so much to all of you who have given me support, it's truly helped me get through the last week. I hope that others who are still waiting results get good news too, my heart goes out to everyone who is in or who has been in this situation.

Thanks again xx

OP posts:
bluecardi · 07/10/2010 11:00

Fabulous news Cherrybug - best wishes xx

SmacsGonePotty · 07/10/2010 15:46

Great news Cherrybug. I'm so pleased for you. I hope the rest of your pregnancy is plain sailing.

Chynah · 07/10/2010 17:22

So pleased for you.

Don't worry about the low lying placenta- something like 95% of them move up before 34 weeks - I've had them with both my pregnancies and they moved up fine.

ilovesprouts · 07/10/2010 17:27

just seen this thread ,great news

MrToad · 07/10/2010 18:07

Just checking back in and very glad to hear your news Cherry!

Don't worry about the low lying placenta, I had one and my consultant said that 95% move around to be in a better place eventually. Mine did!

flamingtoaster · 07/10/2010 18:23

Wonderful news Cherry!

mowmi · 07/10/2010 20:13

Fabulous news - enjoy the rest of your pregnancy!

Remembertoplaywiththekids - it was my first pregnancy. How was the scan on Tuesday?

Mx

RememberToPlaywiththeKids · 07/10/2010 21:37

hat's great news cherry - you must be so relieved x

Mowi - have you had any more pregnancies and if so were your bloods the same then too?

Thanks for asking about the scan - it was ok though my heart was hammering in my chest for most of it! They said that things were pretty much as they said before and baby's tummy is fine etc, so that's good.

mowmi · 10/10/2010 19:14

Baby is my one and only... Glad the scan was ok - hope everything turns out ok for you and the heart problem can be quickly sorted.
Will look out for further updates from you.

Take care x

sarahplummer · 18/10/2010 12:12

Hi there - poor you. I had CVS last week and thank goodness the results came back normal. Both procedures are invasive and there is a risk so you need to have complete bedrest for 72 hours afterwards (I have a 2 year old so this was easier said than done). I spoke to the charity ARC who were amazing. Also apparently it makes all the difference on the experience of the hospital and consultant as to the risk of MC. 95% of CVS's come back normal. It HAS to be YOUR decision but good luck and let me know x

Holiday0609 · 18/10/2023 11:54

Reading your story gives me slight hope. I’ve just had bloods back saying high risk with a 1/2 chance of DS. Papp-a was 0.14, fluid at back of babies neck was fine at 1.2mm, my hcg 3.29. I’m 38 and this is my 3rd baby and I’m absolutely petrified. I can’t think of anything else. Having NIPT tomorrow and then cvs in a couple of weeks. I just feel like my odds of a happy ending are totally against me 😢

SmallMexicanChihuahua · 25/10/2023 19:56

@Holiday0609 Hope everything goes well for you. I'm also 38 and have just been given greater than 1:4 chance of DS. NT was 4.1, HCG 7.8 and PAPP-A 0.49. I've spent ages reading other people's stories on here but no one had such high HCG together with high NT. Waiting for CVS referral but I think I've lost hope already.

Holiday0609 · 25/10/2023 23:33

I’m thinking of you. I’ve been scrolling through the internet trying to find stories of people in similar situations and I don’t know if I’ve made it worse for myself. I never had these fears with my other 2 children so I’ve been struggling to get my head around all of this. I’m trying to say to myself that whatever the outcome, it was never in my hands. What will be will be and we can’t torture ourselves over situations we cannot control. Just try to be as positive as you can and take each day as it comes. I really hope everything is ok for you. 🥰

SmallMexicanChihuahua · 26/10/2023 08:45

Thank you ❤. Yeah, I think I should stop scrolling; even if I find a thousand stories with a positive end that doesn't mean mine will end well. Although I did learn a lot about the different tests and I'm not as scared of the CVS as I initially was, as apparently the risks of miscarriage are lower than the NHS states.
What will be will be is a good way of looking at it, makes it a bit easier that it's not something we can control. It's just the wait for results is crushing. Do you know when you'll have yours? xx

Holiday0609 · 26/10/2023 12:49

I’m away at the moment so I have booked it for the 6th November. I’m really nervous and you’re right in that I too could read tonnes of positive stories but yet you still think you’re going to be that 1 person that gets the bad news. I’ll be thinking of you. Look after yourself and try not to worry 🥰

SmallMexicanChihuahua · 26/10/2023 21:51

You take care too, I'm keeping my fingers crossed for you xx

Obione1 · 24/01/2024 20:54

@Holiday0609 how are you getting on? I'm in a similar situ.

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