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Low PAPP-A - CVS booked - don't feel pregnant

(13 Posts)
Goodiegumdrops Sun 26-Mar-17 03:31:34

Hi all,

As the time suggests, I can't actually sleep. We got the blood tests results back on Thursday saying I had a high risk of downs - 1:116. The rest of results read this:
HCG - 0.94
NT - 1.34
PAPP-A - 0.26 (with a handwritten note saying low next to it and growth scans from 24/40)

The mf phoned me and discussed them as much as you can. We then got a meeting with her that afternoon to discuss next steps. She took us through the serenity blood test as an option but skipped over everything else. We then managed to get a next day appointment to have the blood test with her boss (head of screening mf -not sure if that is her exact title!?) And she actually gave us more options and took the emotion out of it, which for me is better and I just couldn't/can't stop crying.

She also told what our next step could be if we choose to terminate and the counselling we would receive. I feel this is a taboo subject and not read much on people's decision on it on threads.

Anyways, we have a CVS booked for Tuesday at UCL and I now feel like I'm not pregnant. That when I get there for the scan they are going to tell me our baby has died.

This is my second pregnacy my son is currently 13 months old and is a handful in a good way. This is such a different pregnacy - I realise they all are - but the first pregnancy I had terrible morning sickness which would rear it's ugly head at all times of the day and I would retch or be sick. So far in this pregnancy it has been sporadic. I guess I feel this is a sign that my placenta isn't great or that it explains my readings.

I have cramps too, which are normal too. I had them last time. I just hope I haven't signed off on the pregnancy as I'm waiting for bad news.

Even if the 'syndrome ' test comes back all clear, it's the worry of what a low papp-a level can bring. All worst case scenarios albeit but I can't shake it - stil birth, preterm labour, low birth weight and then issues effecting prem baby.

Sorry for my long rant/anxious worry. I'm hopeful that someone has been in the same situation for the positive and negative.

Xxx

verytiredmummy1 Sun 26-Mar-17 03:59:55

I'm sorry I don't have any advice but didn't want to read and run flowers

Goodiegumdrops Sun 26-Mar-17 04:05:28

Thank you @verytiredmummy1 xx

Catherinebee85 Sun 26-Mar-17 04:12:55

Morning. I'm currently 20 weeks pregnant and had a CVS after my PAPP-A and bHCG results made me 1:7 risk of downs.

I got the all clear after the CVS.

I can't comment on the numbers as I'm not medical. My PAPP-A was low and my HCG was high. High levels of the HCG are what often cause sickness however I've not bee sick once the whole pregnancy so they don't always translate. Your nuchal measurement sounds spot on.

All you can do is try your best to think positive. All the screenings are just screenings and broad indicators. I was 1:7 and got the all clear. I didn't even think about what I'd do if it was positive I just simply had to know.

Wishing you all the very best xxx

SarahOoo Sun 26-Mar-17 09:31:43

I'm 38 weeks pregnant and had 1:85 risk with low PAPPa and low bHCG. CVS came back clear.

I worried a little about the low PAPPa but she's growing well and had a growth scan at Kings last week (routine for them) and she's lovely and average.

I can't really give you any advice as I've been in that waiting stage myself and it's hard, really hard. I did try to stay level headed which helped but I don't know how I did it other than talking with me family's and husband.

The best of luck and rest up after the CVS. No work for a good 2-3 days.

Goodiegumdrops Sun 26-Mar-17 19:41:01

Thank you @catherinebee85 and @sarahOoo both comments are helpful. I don't feel as negative but once I'm up/wake up, I can't switch it off.

I appreciate the time replying, especially at that time in the morning! Xxstar

Catherinebee85 Sun 26-Mar-17 20:24:11

No need to thank me, I was working a night shift. It's totally normal for it to take over your thoughts. I had to go to a baby shower the weekend before my CVS which was torture.

Now its over it feels like it was months ago, just a blip in my pregnancy overall. I hope it's the same for you. Your odds are a lot lot lower than mine were too!

I had a 6 in 7 chance that baby would be fine. You've got 115 in 116! Xx

elio Mon 27-Mar-17 08:48:19

I had similar first time around but with a 1:18 downs risk. Dd didn't have downs, we had cvs and she's now 18m old and was 3.5kg at birth. Just wanted to give you an example of a positive outcome. I felt much better after having cvs as I knew there was nothing more I could do but wait for results. Have everything crossed for you. X

Goodiegumdrops Mon 27-Mar-17 11:01:51

I have to be honest. It's not so much the downs risk I am concerned about but the low papp-a level and what can occur because of it.

It is really reassuring to hear positive stories too so thank you ladies xx

I'm a teacher and my school have told me not to come in. They have been supportive. I will be rearranging all my parents evening times too. Also glad I will be able to process the news during Easter.

Thank you again ladies. I will update you xxflowers

zambean Mon 27-Mar-17 12:46:43

I had low PAPP-A at 12 weeks, like you. It wasn't quite as low as yours, but almost: 0.3 MoM, I think. As a result of that, high HCGb, and my age, I came back high risk for T21, though NIPT has confirmed that the baby is all clear for chromosomal disorders.

I was then offered growth scans every 4 weeks from 20 weeks and my baby is an absolute beast! Some measurements on the 85th percentile. At 36 weeks, they estimated his weight as 7lbs already!

My due date is Friday, so how accurate this is remains to be seen. But just telling you so you can be optimistic, low PAPP-A is clearly no guarantee of a small baby, because it looks like mine is going to be a whopper grin

Goodiegumdrops Tue 28-Mar-17 15:16:49

Sorry, bit of a long message. Ok, what a palava!

We had yet another discussion with a midwife, who wanted to check through our choices again. Discussed having a screening test again but this time it was the Harmony test but decided to go for the invasive procedure anyways. At this point, discussion of the screening test brought doubt into my mind and as I said to the mf, there is almost too much choice and so much information it was becoming a bit overwhelming.

Had a scan done, they said that everything so far looks good and that they think it's another boy. Consultant came in ready to do the procedure and they started to discuss my results etc. I was watching and listening to him rather than the lady scanning me. He was basically like, ok, yeah, we can do it, it's not a problem. He didn't look that impressed that I needed to have it. He then left and that had put doubt in my mind. We had another discussion with the midwife and scanning lady and they were like, obviously we could be wrong but baby looks fine at this stage.

Consultant came back in and said, considering everything I wouldn't put you or baby at risk. I like doing cvs, more than happy to do it for you but in all honesty, I doubt you are at risk. We will put you on baby asprin. We have this sexy new test (his words) and it would be much better for you. If it comes back inconclusive, I will see you next week to do an amnio and then take you through the next steps. He also said I was mainly on there because of my low papp-a levels rather than anything else.

He was brilliant actually - they all were at UCL. He later came to speak to us again about our decision before we had the screening test.

I really can't praise the staff enough there. We will go back at 24 weeks to monitor baby but have 20 weeks anomaly scan at our local hospital.

Obviously, not out of the woods and the results may come back positive for downs but we will deal with that in 3-10 days.

Thank you for all your positive stories again xxx

And @zambean , youe comment about your 'beast' really made me smile. Hope you have a positive labour experience. One thing I learnt from my 1st is trust your instincts and push for whatever treatment/care/drugs you want. Xx

Catherinebee85 Tue 28-Mar-17 23:20:31

Brilliant news. Make sure you write a positive review for them smile as a health care professional myself I can say: feedback is really appreciated!

Really you've been made to feel so empowered through this!

Goodiegumdrops Fri 31-Mar-17 17:57:35

Just to follow up. I got my Harmony test results through today so a very quick turn around! I got a low risk 1:10000 which I am pleased about. Just need to take low dose of asprin and regular growth scans.

Think I will be waiting and holding my breath for each scan though. But what a relief.

I go back to UCL hospital at 24 weeks and I intend to write some positive comments about my treatment and the lovely staff that has dealt with me.

Thank you for the support ladies xx

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