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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!

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Missdrifter · 21/01/2020 17:14

At least the wait is almost over. I am hoping to get mine by Friday, I really do not wait to have to wait over the weekend 🙏🏼 The odds are still in our favour x

Missdrifter · 21/01/2020 17:15

@Blizy that’s really annoying for you but fingers crossed you get some good news tomorrow. Do you know the relation between low Papp-a and DS?

JulieC1981 · 21/01/2020 17:19

I'm so sorry you haven't received them today, I pray you get them today so your wait is over.

Missdrifter I also hope you don't have to wait over the weekend. A week is far long enough!

I'm holding onto the odds xx

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NationMcKinley · 21/01/2020 17:23

I’ve been through this and I really feel for all of you waiting for results. It’s truly awful. I had what was termed a “pathologically low” PAPP-A with a corresponding high risk for Down’s Syndrome. I was was scanned every 4 weeks for the whole pregnancy and was also under a foetal cardiology unit as they were concerned about a hole in the heart. It was so stressful.

I’m thinking of all of you waiting for test results.

I was recommended a charity called ARC but although I’ve heard brilliant things about them, at the time I couldn’t face talking to anyone irl if that makes sense. Mumsnet was ace though, so much support. Keep posting if it helps.

Flowers to you all

Blizy · 21/01/2020 17:25

Missdrifter I'm not 100% sure on the relation to Papp a and ds. I know it can be an indicator of placenta insufficiency and heart defects.

I'm checking my email every 2 mins!

JulieC1981 · 21/01/2020 17:34

I've spoken to ARC and they were fab. Very non judgemental and they were able to explain everything to me.

My Quad test mentioned nothing about Papp a, so until mums net I had never heard of it x

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Missdrifter · 21/01/2020 17:44

It’s what has made me high risk. My nuchal measurement was 1.8 which when the consultant checked it was 1.3 and my bloods were apparently fine. So just my age and very low Papp-a made me high risk.

@NationMcKinley can you remember what your Papp-a was? And hoping everything all ended well for you?

JulieC1981 · 21/01/2020 17:53

They weren't able to get measurements at 12 weeks as the neck was to big so took it out of range for the test.

So they gave me the quad blood test and that's all my risk was based on.

Blizy, they email your result? They are going to give me a call, maybe it's because it's the NHS here and is done differently.

Missdifter, how will you get yours? X

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Missdrifter · 21/01/2020 17:55

@JulieC1981 hopefully that is good news for you because my odds would have been higher if the nuchal measurement hadn’t been taken in to account. I will also be receiving a call.x

NationMcKinley · 21/01/2020 18:09

@Missdrifter I think it was 0.36 but my memory is a bit hazy! The foetal medicine consultant was pretty grim when he said how low it was. In conjunction with my other bloods I was given 1:30 risk of Down’s Syndrome and other complications including low birth weight and pre eclampsia.

Blizy · 21/01/2020 18:11

My pap a was 0.166
Have you been prescribed aspirin?

Missdrifter · 21/01/2020 18:19

My Papp-a was 0.19!! The consultant checked the blood flow or something like that and he said I should be fine and one of the ones avoiding any complications, which I was pleased about but if my results come back clear, no doubt I will then go on to worry about my low Papp-a! He did say I could take low dose aspirin, which I have started.

Johnson10 · 21/01/2020 18:21

I keep checking everyday to see how you guys are doing ... your in my thoughts. It’s absolute hell on Earth all the waiting. I wouldn’t wish it on anyone.
I woke up everyday thinking I can’t go through another day of this.
My Papp-a was 0.44, HCG 1.16, NT 3.2mm (told this was normal still) 1 in 33 I was given.

Keep the hope. And stay strong!! Hopefully good news for you all xx

NationMcKinley · 21/01/2020 19:57

I was told it was up to me if I wanted to take low dose (75mg / day) aspirin. Sorry, I should have said that this was 7 years ago when PAPP-A was a relatively new test and my consultant was unsure how relevant it would prove to be in terms of diagnostics and any treatment may well have changed. It may well have been lower as they were very grim about it when I was told. Or maybe the results threshold has changed.

I just feel for you all as I remember acutely how I felt when I was taken into That Room and the wait for results.

I had frequent scans and Doppler studies of the blood flow through the umbilical cord. Because they were “looking for trouble” a possible ventricular septal defect (hole in the heart) was picked up at 18 weeks which again had them concerned about Down’s Syndrome.

I didn’t have an amino although I was offered one. I can’t tell you why! I just literally said NO and wouldn’t entertain the idea. It was weird as I have a background in critical care so totally not averse to anything clinical! The non invasive tests / Harmony etc weren’t available then. I would have had those.

I HATE those MN threads where people post about concerns in pregnancy and loads of people pop up to say “oh I had that and I’m sat next to a healthy 5 year old now” I just don’t think they’re always helpful which is why I didn’t initially say how long ago it was hence the recommendations for aspirin may have changed. My DS was born with no obvious issues although he was smaller and took longer to put weight on than his siblings. He’s huge now and I’m unbelievably and eternally grateful for the fantastic care I had.

I’m really hoping that everything goes well for all of you.

JulieC1981 · 22/01/2020 13:27

Think the nerves about the results are starting to overwhelm me a bit. Feel really panicked, dizzy and sick. Cant see to calm down x

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Missdrifter · 22/01/2020 15:28

Thank you @NationMcKinley.

Also feeling very anxious too but trying to remain calm.

Bilzy I hope you have had some good news today.

Blizy · 22/01/2020 15:35

I'm still waiting!
JulieC1981 when are
You expecting your results?

JulieC1981 · 22/01/2020 15:54

I'm so sorry you are still waiting. I'm expecting them tomorrow, I called earlier to ask if they normally receive results in the morning or afternoon and she said it might even be up to ten days!
Hoping and praying it is tomorrow.

My colleague asked me earlier if I was going to find out if we were having a boy or girl and when my 20 weeks scan was. I told her it was Tuesday and then burst out crying!

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Blizy · 22/01/2020 16:29

Oh JulieC1981 I hope you're ok. Too was told it can take up to 10 days but was told it will probably be 5-7. This is day 7.

JulieC1981 · 22/01/2020 16:38

Thank you, I'm sending some Welsh cwtches to everyone. Nearly time to go home from work, stopped crying at least.

I really hope you have your results today and that they are all clear xx

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Missdrifter · 22/01/2020 17:11

The wait I feel is the worst part. Just feel in limbo and I want to ignore anything pregnancy related especially when people ask how everything is going. Julie did you then explain to your colleague? It’s just so difficult isn’t it.

I was told 97% of results come back within the week. So should hear any day now.

JulieC1981 · 22/01/2020 17:54

I have just had the phone call regarding my results and I'm so relieved to say that it as come back as low risk. I can breathe for the first time in week.

I can't thank you enough for your support and I'm truly praying for you all that your results come back the same way.

I be remaining on the chat as I really want to support you all xx

I explained to my colleague I was awaiting some results but didn't go into detail and she was very understanding x

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JulieC1981 · 22/01/2020 17:56

Sorry for the typing/spelling mistakes x

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Missdrifter · 22/01/2020 18:03

Omg Julie that is amazing news, I am absolutely thrilled for you. You can relax and enjoy your pregnancy now. I will keep you updated in my results although I am not feeling very hopeful x

JulieC1981 · 22/01/2020 18:09

Thank you, I didn't have much hope either due to the 1:7 number and it turned out alright, so it shows there is always hope even when there feels like none.

I will keep you all in my thoughts and hope you get the results before the weekend xx

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