Low PAPP-A, high hCG, 1:16 risk of DS`

(23 Posts)
CloverHeart Sat 22-Mar-14 16:02:19

I am trying to make sense of the facts and figues here and hope other ladies who have been in my position can help me out (with full blown honesty, please).

My levels and measurements are as follows from my scan (at 11w+4 gestation) and serum screen.

NT measurement: 1.4mm
Baby: 48.0mm
PAPP-A: 0.280Mom
(beta)hCG: 5.050

Heart, skull, brain all appear normal. Both arms/hands, legs/feet present. Amniotic levels normal. Nasal bone is present and femoral length is in proportion.

No other hard,soft or "medium" markers currently present.

My lab adjusted risk is 1:16 chance
My age related risk is >1:1000

I understand the figures from a scientific and medical POV (DH and i are health professionals) but would really like to know experiences of other mums with similar results?

I feel pretty lost and utterly useless right now. My Amnio isn't until 7th. What thee hell do I do in the meantime?

Armadale Sat 22-Mar-14 16:08:50

No real experience, except to say that I've had lots of issues in PG where I have had to wait for outcomes and waiting till the 7th for an amnio seems a horribly long time for you.

Have you thought about having a harmony privately? No amnio MC risk then, and if you had it in the next few days, you'd probably have the result back before the 7th.

grobagsforever Sat 22-Mar-14 17:35:24

Hello clover. My experience was very similar to yours indeed. I had papa a of 0.28, HCG of 3.6 and NT of 2.2. No soft markers, scan all normal. I had a 1/15 risk which was totally due to the crazy bloods! I had same day CVS and my result was all clear. I learned that risks like ours that are based on mental bloodwork alone very very very rarely come back positive. Bloods are notorious for giving false positives. Have you been offered cvs or harmony to avoid long wait for amnio? so sorry you are going through this, it is a truly horrible experience.

lucy101 Sat 22-Mar-14 17:41:32

I would consider Harmony too. You might have the info. a bit quicker (and it is less invasive).If you are near London I can't recommend the FMC highly enough in situations like this. I hope you have good news.

mummytobe88 Sat 22-Mar-14 22:23:06

I had very similar results to you NT measurement 1.2, PAPP-A 0.12, HCG 4.3, no markers, nasal bone etc present but the blood results gave us a 1 in 5 chance. I'm 25 and this is my first baby so had no reason to think this would be the result! We opted for the CVS which was done 2 days later and results came back all clear.

I know it's easier said than done but try relax as much as possible. As others have said, bloods very frequently give false positives.

I'm so sorry you're going through this as I know first hand how scary the wait is!

CloverHeart Sun 23-Mar-14 11:08:49

I really wish we could afford the Harmony test, but we just don't have £500+ lying around. Besides, the results are unlikely to come any sooner than if we wait confused

Thank you all for your reassurance and advice. I just feel a bit in limbo at the moment and it's comforting to hear others experiences.

TelephoneTree Thu 27-Mar-14 10:05:17

We had a 1 in 5 risk and DS has DS. Do PM me if you want to ask anything at all and I will be as objective as possible. He is totally fabulous though ;)

I would say just arm yourself with as much accurate and realistic info as possible.

JBrd Thu 27-Mar-14 16:58:34

Clover So sorry to hear that you are in this situation. I read your post at lunchtime, and this afternoon had a call from my hospital with the exact same news sad.
My combined results put my baby at a risk of 1:17 for Down's. I feel numb - I knew my age was a big risk, that alone put me at 1:60, but the nuchal was 1.1mm.
But my PappA is really low - 0.14 MoM, the b-hCG is 1.41.

I had the Harmony test done, but not had the results yet, they are due by Tuesday.

I had so hoped that I wouldn't have to do this, but how have to discuss our options with DH. I had 3 miscarriages last year, but I don't think that I can go on without knowing for certain whether my baby has DS or not, so I need to consider the invasive options (if the Harmony confirms this result).

It is such a horrible place to be.

mummytoh1 Thu 27-Mar-14 19:05:23

I had 1:15 risk with my DS2 in 2010. Papp-a 0.39, bHCG 1.65, nt 2.6mm. Age 35. I was sure I'd be the one, but CVS came back clear and he's snuggled up next to me now having his bedtime milk. x

NitramAtTheKrap Tue 01-Apr-14 22:50:19

Age 32 I had:
nt 4.6;
Pappa 0.6
Hcg 3.0 (I think, may have been 2?)

Anyway that gave me a 1:3 chance of DS.

Amino came back clear. It can and does happen that all is fine.

Xigris Tue 01-Apr-14 23:12:17

Hi Clover poor you, it's a horrid situation isn't it? With my 3rd baby I had a "pathological" PAPP-A of 0.36 and although the nuchal fold was within normal limits my HCG was slightly elevated. We were given a 1/80 probability that our baby had Downs Syndrome from these results. Like you, the scan at 12+3 appeared entirely normal - nasal bone present, ears in the normal position etc etc so that was slightly reassuring. I was scanned under the care of a Foetal Medicine Consultant every 4 weeks and had regular Doppler scans of the blood flow through the umbilical cord as there's some suggestion that a low PAPP-A can affect the placenta. I was also advised to take 75mg of aspirin daily although the evidence for this is not 100%. Happily, all was well and he was born at 40+3 and is now a very opinionated crotchety one year old who is very sweet and very exhausting!

Unfortunately, there's no easy way to get through the next few weeks - I bloody wish there was. For me, keeping busy was the most help, I also had a couple of friends who I could talk things through with.

Like you, I'm also a HCP so it was very daunting at times to be "the other side" so to speak. I really wish you all the very best. Feel free to PM me if I can be of any more help smile

lbmum Wed 02-Apr-14 16:05:31

Hi Cloverheart,
I am so sorry you are in this position. in Sept 2012 I had a cvs after receiving a 1:17 risk. Like you my scan was perfect with nose bone, NT 2mm but bloods were bad. HCG was 3.5, PAPP A was 0.3. Sadly we got the most awful call you can ever imagine and found out our son had DS. Today, I am 40 years old and have just returned from another cvs. My risk this time is 1:64 so slightly better but again the bloods let me down, not the scan. This time my HCG is 3, PAPP A is 0.8 and NT 1.7. Better but not great. We have resigned ourselves to the worst, to lightning striking twice. The cvs in itself was fine. I ache a bit but once they heard the baby's heartbeat after the procedure they said the risk of miscarriage had already decreased. I was at Kings in London and they gave me the Harmony test for free. I will have the cvs results by the time the Harmony results come in but if it can help ladies in the future then I will have done some good. This is our last chance, we will not be trying again and putting ourselves through this for a third time. Keeping everything crossed for you. Please let us know how you get on. xxx

lbmum Wed 02-Apr-14 16:19:06

Forgot to say. I have found the charity ARC to be my life support. Stands for Antenatal Results and Choices. Give them a ring and they are happy to listen and chat. xxx

SaggyAndLucy Thu 03-Apr-14 19:03:07

Hi. I just wanted to come and offer some support.
I found myself in the same situation. I cant remember what my blood levels were but after the scan and blood results came back, my odds came back as 1 in 5. I waited for an amnio at UCLH for 10 days and then ended up with cvs which could well have been done sooner! The accompanying scan upped my risk to 1 in 3.
In answer to your question of how you make it through the wait, my reply would be 'any way you can'. sad the more you think about it the longer the time takes. The best you can do is just keep busy.
In term of other people's experiences, our cvs confirmed Downs. It was a horrendous time with more than a bit of conflict with DP, but I can honestly say those days up to and around the test and the results were the worst. Nothing is as horrible as the worry and stress and waiting. Once we knew and it was apparently that I WOULDN'T be terminating, it was onwards and upwards. There is masses of support out there, TelephoneTree is a bloody star who has kept me going over the last few months and since dd arrived there are health professionals falling over themselves to help us.
Now shehas arrived, shes 4 weeks she is the most adorable, funny, beautiful, character filled little monkey Ive ever met and we all love her to bits.
Whatever your results and whatever you decide, youll be ok. it just takes time to get your head straight. I just wanted to add my voice to your thread. x

CloverHeart Fri 04-Apr-14 13:39:04

Thank you all so much for your advice and support.

I had exams this week which kept me well and truly distracted and its my birthday tomorrow so we are off out with DS to do something nice.

I have settled out a bit mentally now. I am remaining positive and right now there is nothing we can do about the situation. The Amnio is on Monday so we are making the most of the weekend before I have to rest up (luckilly, DH has already booked it off as we were planning to go away for birthday).

I will let you all know how it goes. We should know by Thursday at the latest but, as DH works in the Lab at hosp, they may try and prioritise our results (bit unfair for most of his friends/colleagues to know results/sex of our baby while we wait around).

lbmum Fri 04-Apr-14 21:03:06

Thinking of you Cloverheart, hope the amnio goes well on Monday. We will be getting our results on Monday, tough day for both of us but will be thinking of you. xxx

goosey123 Sun 06-Apr-14 23:05:01

Sorry you are all going through this, I've been in this position and the waiting is awful.

I wanted to say hello to ibmum. I recognise your name from 2012, and went through this at the same time as you, in the end my pregnancy didn't work out either. So sorry you are going through this again, it must be so hard. Thinking of you tomorrow.

CloverHeart Wed 09-Apr-14 08:59:45

Thank you everyone, for sharing your stories and for your support thanks

Amnio was done on Monday and I've done nothing since the procedure but wait for the call. Not much else I can do really sad

CloverHeart Wed 09-Apr-14 17:42:49

I just got my results. I'm all clear!

Just want to thank you all for your support. If it wasn't for you sharing your stories with me I couldn't have straightened things out in my head and weighed up and prepared for all the possible outcomes of this thanks

Right, better continue calling family and letting them know!

Teaandtoast1 Wed 09-Apr-14 19:03:38

That's great news! X

NationMcKinley Wed 09-Apr-14 19:17:43

Yay! That's great news, Clover! congratulations! Xx

JBrd Wed 09-Apr-14 21:43:28

Fab news!

lbmum Sun 13-Apr-14 23:22:55

Great news Clover!! I am all clear too! Haven't been able to update as we were on holiday and had no internet connection. Of course I am still worrying now about the initial results versus the full results....aaagh! Does anyone know how likely it is that if we are given an all-clear for DS it will stay that way for full results? Goosey123, so sorry to hear that hun. They were dark times for us. Did you join the ARC forum?I may know you from there! xxx

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