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High risk

241 replies

JulieC1981 · 14/01/2020 18:04

I have been told I'm in a high risk for down syndrome.

I have to go back on Thursday for the next blood test.

I'm 38 years old and nearly 18 weeks. So nervous and scared about the results and next steps!

OP posts:
Bigkingdom · 13/05/2020 19:11

@S1986york i’m the same. I had my NIPT the day before you had yours. I am going out of my mind. I can’t sleep, i’m snappy, i’m crying all the time and feel out of control like you. I just need the results. I have a really bad feeling i am going to be that one with bad news.

S1986york · 13/05/2020 20:29

It’s nice to know I’m not the only one. I really hope everything is ok with your results, my heart goes out to you in such a difficult time! I had to call my GP because of how bad my nerves are. All we can really do is hold tight and and hope it is ok 🙏🤞xxx

Missdrifter · 13/05/2020 20:51

I have everything crossed for both of you!! The waiting is just unbearable so I am hoping you get your results back ASAP. I had mine on a Friday and the results were in by the following Thursday. Feel free to vent on here, I found that helped me because my OH was just so calm during the whole process as he believes the NHS screening tests just cause unnecessary worry with how many high risks they generate. I focussed on the 1 and not the 97% chance that it wouldn’t be DS, the odds are still massively in your favour! Good luck xx

Bigkingdom · 13/05/2020 21:08

@S1986york thank you. I really hope your results come back ok too. I was told i may get my results Friday, if not Monday as it was a bank holiday.

@missdrifter thank you also. I wish my results would hurry up. I don’t think i will get them until next week.

Liveforholidays · 14/05/2020 19:12

Good luck waiting for results. It really is just the worst thing. Xx

Bigkingdom · 14/05/2020 19:56

Thank you. I spoke to the screening midwife today and she said i will most probably get mine on Monday.

S1986york · 14/05/2020 20:25

@Bigkingdom I’ll probably get mine on Monday too 😩 it’s absolutely destroying me! Did you get your NIPT test done privately? I know they have to send the samples to London, I stay in Glasgow. I really hope everything is ok! Xx

Bigkingdom · 14/05/2020 20:53

@S1986york i had mine done at my local NHS hospital in London. I’m pretty sure the lab is at St. George’s hospital which isn’t far from me. The waiting is just awful. I kind of wish i had gone for the CVS, i might have had those results sooner.

Liveforholidays · 14/05/2020 21:05

I had to wait two weeks for my results as birmingham women's only release results on a Thursday. As my blood was taken on a Thursday I had to wait the full two weeks. It was torture! Not long to wait now though.

Worried134 · 14/05/2020 23:24

Hi all had my harmony on Thursday. Lucky enough to have it on NHS due to trial in my area. I have been told results take two weeks and I was told the bloods are flown to America. How the hell do wr get through this wait. A glass of wine would help right about now. Can’t bond with pregnancy and I’m so angry/upset.

Worried134 · 14/05/2020 23:27

Meant Wednesday not Thursday

Liveforholidays · 15/05/2020 06:35

There is no easy way of getting through the days. You just try to occupy yourself in whatever way you can and the time just slowly ticks by. I tried to keep myself busy with work and other activities but that's not easy at the moment. It made me feel better to know that I was at least doing something while waiting to have an amnio at 16 weeks (which incidently I didn't have in the end). Just be kind to yourself.... It's OK to not want to bond with the pregnancy. You are protecting yourself just in case you have to make a very difficult decision. There is plenty of time for that once you get the rest results back.

Worried134 · 15/05/2020 12:37

Thank you for you kind words @Liveforholidays when are you hoping to get your results. Why did u decide not to do amino so you mind me asking x

Liveforholidays · 15/05/2020 13:11

I had a high chance, 1 in 13 and was too late for CVS. I booked for an amnio at 16 weeks but decided that I would pay for NIPT in the weeks between. During the waiting time I did lots of reading and decided that because the NIPT is really accurate for T21 and there was nothing of any concern on the scan and the nuchal fold was within normal range I was happy to accept the low risk result. I will be honest, it has been hard not to have a definite answer but at the time I didn't want to risk the invasive procedure.

Liveforholidays · 15/05/2020 13:13

I'm 38 weeks now so not long to go!

Rlrhill · 15/05/2020 21:57

Hello everyone , I'm wondering if anyone has been diagnosed with major placenta praevia at their 20 week scan I'm really worried and dont know what to do or who to talk to x

Worried134 · 16/05/2020 07:32

Oh wow your at the fun end congratulations 🥰 I bet ur getting excited x

Worried134 · 16/05/2020 07:32

@Rlrhill I’m afraid I haven’t heard of that before x

S1986york · 16/05/2020 08:07

@Rlrhill with placenta praevia you should be consultant lead throughout your pregnancy. I am a theatre nurse and have done a small amount of obstetrics, as long as you are getting the right care and aren’t overdoing things this can be managed safely throughout your pregnancy.

Momlin · 16/05/2020 10:34

I’m 33 next month 2nd pregnancy. 1st had severe pre eclampsia and little one was delivered early due to it.
I had a cvs yesterday as our odds came back as 1:33 for Trisomy 21 NT was fine but my bloods were flagging. I had another scan yesterday and she couldn’t see anything that would suggest the baby has downs heart etc but couldn’t see the nasal bone as the baby was in the wrong position. I suffer with anxiety and the wait for the results is really effecting me. I can’t seem to get a grip.
Has anyone read that low PAPP-A is connected with pre eclampsia? I know I’m probably clutching at straws but wondering if it could be that again in this pregnancy rather than Trisomy 21?? Although I’m only just over 14 weeks

Missdrifter · 16/05/2020 10:55

Hi @momlin sorry you are going through this. I have very low PAPP-A and that along with my age (34) it gave me a high risk for DS. I had the harmony and it came back low risk so the doctors are not concerned about DS now but I am having regular growth scans due to low PAPP-A. I am aware of the connection between low PAPP-A and pre eclampsia but don’t know how strong the connection sorry. I suffer from anxiety too and I know how hard it is but at least having the CVS you will know for sure soon. Will keep everything crossed for you!

Momlin · 16/05/2020 11:01

Hi @Missdrifter thank you for your reassurance it is definitely good to hear the outcomes of others. I believe I have a low PAPP-A and high HCG but I also do suffer with hypermerisis which could explain the hcg levels. I guess I’m just clutching at straws really.

NoCallerID · 16/05/2020 19:33

@Momlin I'm sorry you're going through this and I hope your cvs comes back clear. Did they give you the hcg and Papp-a levels?

Similar to you, 2nd baby, 33, 1/40 downs. No soft markers, NT was fine. Omphalocele which can in rare occasions be connected to T21 but also stand alone or often comes with other Trisomies but isn't an official marker at this stage. My HCG was >4 and Papp-A was 0.37. We had done the harmony test, results on the same day which said 99% T21. CVs then confirmed it.

I have everything crossed for you.

Liveforholidays · 16/05/2020 19:49

@Momlin there's a really good, supportive Facebook group called 'Low papp a Pregnancy support group'. You'll find all the info you need on there and will find that the majority of women with low papp a have no adverse effects.

Momlin · 16/05/2020 19:53

Hi @NoCallerID

Unfortunately she didn’t give me my levels but the phonecall was such a blur I didn’t even ask for them.
Did you say your little one had Omphalocele? What was the baby’s NT measurement if you don’t mind me asking?

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