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What am I do 😔

(30 Posts)
HKM94 Sat 10-Aug-19 22:24:19

I am currently 13 weeks pregnant and just had the 12 week scan.. the baby looked nice and healthy and was jumping about waving its arm around, my DP and I have a lovely little 9 month old girl so had no reason to suspect anything would go wrong but I received a phone call telling me that the baby has a 1 in 41 chance of having down syndome.. this is a result of a very high HCG level and very low Papp-a hormone level. We spoke to a midwife at the hospital the day after and they said it would be a 97.5 chance that the baby would not be affected but we have agreed to do the testing anyway. This will be done on Monday and the results will be through by Thursday. The issue I’ve got is that we have decided without any doubt that we would terminate this pregnancy if the result was that the baby was affected as we have a lot going on if our life and in any case we would not be able to provide the baby with the care he or she would need (this was not an easy decision to make but we have to think of our daughter who is only 10months at the moment) I guess the issue I have is that if the baby does not have downs.. I still have the issue of a poor functioning placenta which could cause all kind of problems on its own, I’ve looked these up with devastating results 😭 risk of miscarriage in the 2nd trimester, risk of stillbirth increase and risk that the baby is born really small.. I’ve spent every day since Wednesday when I found crying on and off.. I feel awful like I don’t want to connect to my pregnancy or baby now.. my DP was playing with our DD and he said to her you have food in your belly and mummy has a baby in hers and it made me shudder and feel really cold 😭 I had a really terrible pregnancy with my DD (gallstones and a house move that very nearly didn’t happen) a labour that went to shit (excuse my expression).. I was left from 7am till 2:00pm having contractions but no one would do anything as I wasn’t diluting and no one checked to see if my waters had broken properly as they didn’t think they had 😡 they then gave me gas and air which I was left on all the way from 2:45 till I gave birth to my daughter the following day at 6:52am and that was an emergency c section after they tried to forceps!!! Like I shouldn’t have been left that long.. there are things to do to speed up the dilation as after the waters break there are only some many hours they can leave you before they have to get the baby out! This is a different issue altogether so do ignore my ramblings 😪 my question which I hope i don’t get attacked for is.. do I carry on with this pregnancy even if the baby doesn’t have downs as I don’t want to connect with the baby if there are all these other risks to myself and the baby.. I don’t want to bond and go full term just for the baby to be born stillborn especially since I’d need to have another c section and I don’t want to risk having a miscarriage in the second trimester after I’ve let myself connect with the baby 😪 I keep crying every time I think about him or her.. but I worry it is more crying because I know I don’t want to continue if i am going to get more hurt in months to come 💔 please could someone advise

EscapeTheOrdinary Sat 10-Aug-19 22:34:22

No one can advise you on what to do but you have just had news you were not expecting so give yourself time to process it. The chances of the baby not having Down’s syndrome are very high. There is always a risk of complication, miscarriage and still birth with any pregnancy and googling it will only show you what your searching for. If you search failing placenta it will not show you positive stories. The only advice I would give you is wait for the results and speak to your midwife or consultant if you have one. Step away from search engines and don’t make any rash decisions. Get the facts, talk to the professionals and make your next move from there. With your previous experience of pregnancy I would also recommend raising it with your midwife to see what can be done differently this time if you do decide to proceed flowers

RealMermaid Sat 10-Aug-19 22:41:59

You need some time to adjust and think about it. It's not surprising you're upset and anxious but you've only just had the scan so you need some time. Remember that even if this test had come back saying everything was fine, that wouldn't mean that there was no risk of any of the issues you're worrying about happening. These risks exist for every pregnancy anyway.

ReeReeR Sat 10-Aug-19 22:45:45

No one can tell you what to do. Make a decision re the DS birth with everything else there are always risks but if there are issues with placenta etc you will be closely monitored. I can understand why you are upset and worried but I honestly think it would be ridiculous to consider ending your pregnancy on the off chance things could go wrong and I don’t think it would be much easier for you to deal with that than if your pregnancy were to end for reasons outside your control. I think if it were me I would struggle more with that decision. If you make an informed decision following DS result then that is somewhat different. Maybe discuss all the risks and your concerns with your doctor at that stage.

Above all, the odds are in favour of you having a perfectly healthy baby OP. Google is not our friend sometimes.

LifeIsAnArt Sun 11-Aug-19 00:05:42

Hold on here for a minute, I think it's too easy to overthink during pregnancy (I do too) but it wouldn't cross my mind to terminate a pregnancy just because there would be a chance for something undesirable.

If it helps at all, I had low Papp-A during my first pregnancy and had an extra scan or two to monitor growth and everything went on track and well. Placenta turned out to function well and no issues with growth etc. So I would advise talking to your healthcare professionals to get a realistic understanding of your situation (rather than turning to Me Google). How low is your Papp-A?

LifeIsAnArt Sun 11-Aug-19 00:06:46

That should've said Mr Google...

HKM94 Sun 11-Aug-19 06:40:07

Hi all thank you for your responses! I know I am probably causing myself undue stress and worry for no reason! I have just had a really bad year.. bad labour and gallstone surgery in April. This pregnancy was supposed to be enjoyable and all the stuff that I missed out on with the first pregnancy I was supposed to enjoy this time around now I feel I can’t. The first pregnancy I didn’t even get a bump because I was losing weight due to the gallstones.. I weighed less at the end than I did at the beginning 😭 even though my DD was a nice healthy size.

@LifeIsAnArt, my papp-a levels were 0.36 and my HCG levels were 22.96

MiniMaxi Sun 11-Aug-19 06:50:07

OP, have you heard about the Harmony test? If available near you it could help you get some clarity regarding actual likelihood of a genetic disorder. (It's a non invasive genetic blood test)

Only you and your partner can make a decision re what you would do if baby has Down's - but incidentally a friend of mine was given a 1 in 8 chance, decided to proceed as baby was much wanted regardless of any condition it might have, and he's absolutely fine.

Hope it all works out for you.

HKM94 Sun 11-Aug-19 07:06:13

I’ve not heard of the harmony test but I am having the CVS on Monday at LGI.. they told me that would give me a definitive answer. We have decided what we would do if the results came back positive for Downs or any of the other ones. The issue I have is what could be mentally or physically wrong with the child as a result of the placenta not growing properly.

There is a possibility I would need to be induced early if the baby stopped growing and I just worry what if there is something physically or mentally wrong with them as a result of all of this

Bobbiepin Sun 11-Aug-19 07:26:24

It might be worth asking to be put in touch with the perinatal MH team to help you deal with the trauma of your last birth and support you in making the right choice for you regarding this pregnancy. You can still ask for a debrief with a midwife from your delivery.

HKM94 Sun 11-Aug-19 07:47:43

Hi @Bonniepin- I guess I could ask to speak to someone regarding my MH but I don’t feel like anything is wrong with that.. I just don’t feel like I am going to enjoy this pregnancy now. I have asked my midwife to arrange to a debrief of my last delivery as even without these new results I felt like something had gone wrong and I was left to my own devices for too long.. I wanted information on how it went so horribly wrong as I kind of feel like somewhere along the lines someone didn’t do their job properly and I do not want this to be the case this time around.

stucknoue Sun 11-Aug-19 07:56:56

We can't tell you what you should do, but the test still says that you are most likely not carrying a baby with Downs. There's further testing you could have for conclusive answers but that comes with a risk of miscarriage, I would also suggest you request a fetal echocardiogram (checking the heart) because the biggest complication with downs is heart problems. Educate yourselves about downs of course - contrary to what I used to think, it's quite a spectrum so once ruled out serious heart issues you could then make a judgement if to continue the pregnancy if the amio comes back positive. It's a very tough decision. I have decided I would not test but I'm probably not having more kids now, it's such a personal issue

Sandybval Sun 11-Aug-19 08:01:29

I wouldn't give yourself a hard time for not 'enjoying' the pregnancy, a lot of women don't.

ReeReeR Sun 11-Aug-19 10:39:18

OP I think the main thing is that you are aware of the risks. You should be able to get an answer re DS and you know what you would do. Your child was healthy last time and that is the main thing. It is also the main this time around. If you can enjoy your pregnancy then great but many people don’t especially if they have related health problems or if they are anxious due to previous complications. I have found LGI to be very good.

NotSoThinLizzy Sun 11-Aug-19 10:47:02

Morning 😊 I have low pappA with this pregnancy and like you I googled which was the worse thing to do. Most of the time low pappA dosent affect baby theres a really good support group on facebook I'm part of and you can ask any questions and hear all the positive stories. My baby is actually measuring ahead so far so low pappA isn't affecting us atm. It's just something to keep an eye on. You'll get extra growth scans from 28 weeks just to keep an eye on baby and if it looks like baby isn't growing as they should be you'll be induced a bit earlier.

Bobbiepin Sun 11-Aug-19 12:46:53

I suggested talking to the MH team because they will be able to provide an unbiased ear to listen and help you organise your thoughts regarding this pregnancy. Please don't beat yourself up because you aren't enjoying it. Lots of women dislike being pregnant, even before the trials you're going through.

PowerslidePanda Sun 11-Aug-19 13:19:05

do I carry on with this pregnancy even if the baby doesn’t have downs as I don’t want to connect with the baby if there are all these other risks to myself and the baby.. I don’t want to bond and go full term just for the baby to be born stillborn especially since I’d need to have another c section and I don’t want to risk having a miscarriage in the second trimester after I’ve let myself connect with the baby

I had low PAPP-A in my first pregnancy - similar measurements to you - and researched it a lot. Low PAPP-A doesn't mean there is a problem with the placenta, it's just an indication that there could be. In fact, 9 out of 10 low PAPP-A pregnancies turn out to be completely normal and healthy (in my case, I went 10 days overdue and my baby was a very healthy 8lb 3oz!). For the 1 in 10 where it does have some impact, in the majority of cases the complication is restricted growth towards the middle or end of the third trimester (which is why you'll have an extra growth scan at this time) - sometimes resulting in the baby being delivered a few weeks early. Only in very, very rare cases does it result in miscarriage or stillbirth.

Seahawk80 Mon 12-Aug-19 08:40:54

I've had this twice now and have had both good news and bad news after the CVS. With DS I had 1/11 for downs and 1/13 for Edwards / Patau. I had a CVS and then got the news that all was clear. I had low Papp A and high HCG. I had extra growth scans but my pregnancy was straightforward and he was born at 40+3 weighing 6lb13. I was induced on my due date due to the low Papp A. If you have a planned c section this time they would do it at 39 weeks normally. They didn't want me to go overdue because of the low Papp A and I just wanted him to be ok. My cycles are really long so I think I was prob only about 39 weeks when induced.

On the other side my last pregnancy the risk was 1/2 for downs. This time it was bad news and we decided to terminate (for the same reasons as you give). It was very sad but it went as smoothly as it could and we are ok and have deciddd to try again one more time. I wouldn't have the harmony test at this point as you have to wait 2 weeks for results and if you got a positive for downs they then do a CVS anyway to confirm so you are adding 2 weeks to the wait. We will have the harmony next time at 10 weeks so that we have the results before the NHS 12 week scan as I can't go through the scan / odds / wait for a 3rd time.

I hope it all goes well for you. Keep yourself as distracted as possible while you wait, it's a very hard time but worrying won't change the result. I was more positive second tome around and even though it was bad news I'm glad I stayed positive as it made the wait more bearable.

Feel free to pm me if you have any questions or just want to chat thanks

mightypinkdms Mon 12-Aug-19 09:25:47

Hi read your post and am so sorry you are feeling this way, just wanted to say I’ve had low PAPP-A three times, and just had my third healthy (read:big) baby this Friday. My advice would be with regards to the PAPP-A - something I’ve been told three times - is that it’s a marker for a potential problem, but plenty of people have healthy, full-term babies regardless. I had no end of complications this pregnancy, and all of them could have potentially awful outcomes, but he is perfect. Please talk to the consultants, doctors and midwifes to help make an informed decision - I’ve found they have been invaluable to me, particularly on the difficult days. Good luck xx

LifeIsAnArt Mon 12-Aug-19 14:44:19

@HKM94 ok I just checked and my papp-a was even lower than yours, at 0.25. I remember the doctor saying it was low but not excessively so, so I can only imagine your figure is even closer towards the "normal" mark. Did not cause so much concern to me at the time and I felt well looked after as had extra scans to monitor growth. Baby delivered healthy, a good weight, past her due date.

I know it's hard but as someone above has said, low Papp-a doesn't necessarily mean that there's something wrong with the placenta, just that there's a chance there could be.

hellenbackagen Mon 12-Aug-19 14:54:50

a few years ago i had some devestating news about a much wanted pregnancy, i was 44 so it was my last chance. i had the CVS test too to confirm things.

i found ARC (ante natal results and choices) to be extremely helpful - they have a telephone help line and also send out literature so you can make informed choices.

google ARC , and best of luck.

highhopess Mon 12-Aug-19 15:03:24

Sorry you are going through this. I had cvs done at LGI with dr Glanville about 2 weeks ago. It is a nerve racking time and I totally appreciate how you feel. You will get your initial results 2 days after cvs test and also gender of baby if you would like to know. Hope this is a positive outcome for you.

HKM94 Mon 12-Aug-19 15:22:55

Hi all, thank you for your supportive results! Luckily I’ve taken a couple of days to just cheer myself up.. I met my nephew on Saturday and I spent Sunday with my DP’s family so that kept my mind off it. I had the test at 9:30 today and luckily as I was chatting away to the nurse whilst they were doing it, my mind was taken off it. We were watching baby bouncing around on the screen, he or she is an active little bean. The consultant says that she couldn’t see anything wrong with the baby’s heart and she checked the NT again, she said it must have been the bloods which have made the result so high. I will be trying to take my mind off it whilst I wait for the results.. and yes we are going to find out what we are having ☺️

Thank you everyone for your supportive comments, feel slightly less like I am surrounded by dark clouds but until I have the results I won’t be able to relax completely 💕

sheshootssheimplores Mon 12-Aug-19 15:27:17

I would advise having the Harmony or Nifty test done. That will tell you with 99% accuracy.

Brandygirl27 Mon 12-Aug-19 15:27:53

I would like to reassure you I had low pap a with my little boy and he was absolutely fine no problem what so ever 😍 I had to have more growth scans and I was induced on my due date, Keep positive hun xx

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