High risk for Downs- can’t stop crying

[Scottishgirl646]

Hi mummies,
I had a call on Tuesday to say that my Down’s syndrome risk from second trimester screening is high risk at 1 in 14. I can’t stop crying, I can’t eat, I can’t sleep, I’m beside myself with worry. My partner and I had already decided that we would terminate if anything showed up- please no judgement, we already have a 2 year old and we believe this decision to be the best for our family. Since finding out the result from the screening, I have completely detached myself from this pregnancy. I have returned all baby things I bought, deleted all my pregnancy apps etc- it’s my way of self preservation in case we have to terminate. Due to baby being in a difficult position we weren’t dated until I was 16 weeks. I’m now 17+1. The screening midwife did tell me that screening was less reliable in the second trimester.
I’m waiting for a NIPT at the hospital on Monday, and the results will take a week. I’m absolutely beside myself and I just can’t stop crying. Is anyone else going through this too?
All I can think is that if my NIPT is positive, then I have an amino, it may mean that I am having a termination at 20 weeks and I’m having recurring nightmares about delivering a baby at that gestation. I wake up in cold sweats hyperventilating. I feel like I have been living in a nightmare since that phone-call on Tuesday. X

@Scottishgirl
I am so glad it helped you and you have a plan that you feel will suit your needs. I obviously hope you never have to use that information but it was of comfort to me and I'm not sure many people know it's an option.
I really hope your results come back quickly and clear. Lots of support here on this thread should you need to talk through anything.

Thanks for all of your messages. They are bringing me some comfort at this age up time. I’m working all weekend and I can barely function. I can’t stop crying, I’ve barely slept. I’m dreading that phone call on Monday. My good friend has had a beautiful baby boy today as a planned home birth, and I’m so happy for you but I’m also so broken that I may loose my baby. I’m feeling so low and really struggling to cope. I wanted to phone arc but I saw that the helpline is closed at the weekend. I don’t even know why I am writing this, I just can’t think straight and I’m so scared about my baby.

I had a 1 in 30 chance of downs with my second. I was 20 at the time. My daughter is absolutely perfect and does not have downs. I had amniocentesis to confirm around 17 weeks. I completely understand your worry.
My older friend 45 had a 1 in 6 chance and her little girl does not have it either. So there’s still a good chance your child will be fine

Hang on in there. I had a risk for Downs and my 20 week scan was fine. I think the worry is hard to shift once you have been through this experience so do bear that in mind.

Hi everyone, I just wanted to come back to update everyone as I have just had a phone call from the hospital from my screening midwife. I came back low risk for Downs, Patau and Edwards syndrome. The relief I feel is completely overwhelming. This has been the worst week of my life and I just wanted to Thank everyone for taking the time to message. To anyone else going through this awful wait I am sending you all of my positivity, thoughts and love. Do whatever you have to do to get you through this awful time xxx

Yay!! So pleased for you, great news! It’s time to enjoy the rest of your pregnancy and get excited again xx

@Scottishgirl646 so so pleased for you. Little update from me our NIPT test came back on Thursday & we are

So happy for you OP! Been following the thread and I'm relieved on your behalf xx

I was coming on to say that even though 1 on 14 sounds high of think of it as 13/14 with it Not being downs.

That's great you've had that result :)

@Han2654 sorry to hear that.

Thank you everyone, this really has been the most stressful time of my life and I really appreciate your well wishes.
@Han2654 I’m so sorry to hear this, I truly am. I’m sending you a big squeeze and all my love xxx

Ohh @Scottishgirl that is amazing news!!! Thank you for coming back with an update, I'm so glad to hear you have a happy result.
Be kind to yourself over the next few weeks, you have been through a trauma and living with an unreal amount of stress and it's unlikely you will bounce back to normal! I found I was exhausted from being on edge for so long and still struggle to reconnect with the pregnancy, just be kind and treat yourself to lots of snacks and baths and what ever you fancy.

@Han2654 I don't want to be insensitive but please know that a Down Syndrome diagnosis doesn't have to be the end of the world. As someone who works on a day to day basis with some truly wonderful individuals who have DS I can honestly say they are amazing. Indeed my favourite person on the planet is a young lady with DS.
With the right help and support many go on to lead healthy and independent lives. It might not be what you would have chosen for them but many/most do lead fulfilling lives.
The positive about Down syndrome organisation are brilliant and provide great support.
I wish you well however things turn out for you.

@Dobbyafreeelf Don't mean to be rude but that is really insensitive. You don't have a clue about what our decision is you also don't know a thing about our personal situation.

Please think before you start offering advice you have no idea the stress/anxiety we have been through the last 3 weeks & the pain/emotions we are currently feeling.

I really do not want/need to have an argument but I am have having the worst time of my life & in a very very dark place mentally. The last thing I need is more stress/upset

@han2654 just want you to know I went through this a few years back so I know how you feel. Thinking of you

@Han2654 it was meant as supportive not insensitive. No I don't know your circumstances but I do know there is often really poor advice for parents in your situation.
You have to make the choice that is right for you and your family. And I totally get that!

All I was trying to do was direct you to some support from others who have been in your shoes.

@Han2654 so sorry to hear your news. Please feel free to pm me if you want to chat or talk through with someone who has been through the same @Dobbyafreeelf unfortunately for a lot of people a down syndrome diagnosis isn't just that. There are often other factors present, severe heart issues, issues affecting compatibility with life that influence a person's decision to decide to carry on with a pregnancy (that for some people may not reach term) or to make the heartbreaking decision that no mother should have to make to terminate a wanted pregnancy

@Scottishgirl646 so so pleased to hear your news. It really is the worst time waiting for those results. Enjoy the rest of your pregnancy xx

You may want to ask amnio to screen all chromosomes for micro deletions or duplications if you having one anyway
There are very many syndromes which are "not down syndrome " . But equally wide varietyof outcomes......"not DS " does not guarantee anything other than "not DS".

They are more common than you might think.

@Han2654 So sorry that you're going through this; it's a terrible worry to learn that a baby is at risk of health problems, and the uncertainty of it all can make things feel even harder.

It's not my place, or anyone's place, to make assumptions about what is the right decision for your family. That's a decision only you can make and trust yourself that whatever happens, you'll make the right choice for your family. Whatever you decide, there are resources and support available for you. Your doctor should be happy to take as much time as you need to talk things through with you.

Thinking of you.

I found this thread by chance but I am going through something similar. Not in the UK but at my 12 week scan the doctor noticed some anomalies on the baby's heart and recommended I pay for the Harmony test, which my insurance didn't cover so it cost me the equivalent of 500 pounds.
The results should come in on Thursday. We're on holiday and im checking my emails constantly.
I guess even if it is not a trisomy there is something wrong with my baby's heart, so the hope is that whatever is wrong it is still compatible with life - and a good quality of life, not a life of endless suffering.

@LostThings @Mrsof2018 @Scirocco thank you all. So greatful for your support & hearing others have been through the same 💕

@Han2654 I just wanted to message and see how you are doing? I have been thinking about you since you wrote about your results. Sending a big hug x

Hey everyone, really pleased I came across this thread and to see some positive outcomes for people who were in the situation I am in now.

I had my nhs test on Monday and got the dreaded call yesterday saying I have a 1 in 43 risk of having a baby with DS. I’m 35 and the NT was 3mm (scan was done at 13+4). My bloods were apparently fine but I seem to be quite a high risk based on the NT alone as I was under the impression that still falls at the higher end of the “normal” range. I haven’t slept all night and can’t stop crying - this baby is our first and is after a horrendous journey with ivf. I’m booked in for a CVS test tomorrow and I just can’t think about anything else. Has anyone had that rather than the amnio? Does it hurt?

Also I meant to ask, after spending a night of incessant googling, even if the cvs shows there is now DS that sometimes there are other genetic conditions which can result. Are there any further tests (nhs or private) I can screen for these? Thanks in advance, I hope I’m not coming across as callous. My partner and I just don’t have the capacity to raise a child with SN and we didn’t even think about all of this as a possibility as we were just so happy to be pregnant 😭