NT 9.4mm at 12+4 so worried

[HopefulSparkler]

Total newbie here Had my 12 week scan today and things don’t look great for the little one. I’m 38 and this is my first pregnancy. The sonographer was very cold, I know that’s their job but she certainly made it clear my baby is not in great shape. The NT measurement was 9.4mm, which I know is very high. The fluid is all around the baby but it’s heartbeat was strong. She also said the intestines didn’t look like they’d moved inside the body. I had a follow up with a lovely midwife straight after who took my bloods to test for the different trisomies. I’m booked in for a CVS at Birmingham Women’s on Monday. I just feel so sad. This pregnancy wasn’t planned but seemed like such a gift. No I’m so worried it’s going to be unviable and we will have to terminate. Has anyone gone through this and had a good outcome? TIA

Hey, I didn't want to read an run...
I've recently been in a similar position (NT was fine but bloods came back high risk and so did the NIPT, also omphalocele - organs on the outside). I also had a CVS at Birmingham Women's two weeks ago and I just wanted to let you know of our experience. We were greeted by 4 professionals in the room, one consultant, two doctors in training and an amazing midwife. We felt the consultant was very pushy to start with and it felt that she was pushing towards an amniocentesis which would have meant that we would've had to wait even longer, so we/I kept saying I was aware of the risks and in hindsight we think this might have simply been an assessment of whether I was actually wanting to do this myself or whether I was made to go through with this by my husband (obviously not but we wouldn't be surprised if there were situations where one person was made to do something they didn't agree with...) anyway, she completely changed once she'd seen the baby on the screen and seen the omphalocele and was happy to go ahead and tried very very hard but unfortunately we had to come back the next day. We had the results on a Tuesday (after calling them and having them chase the lab) and everybody has been very helpful and nice. So please don't be surprised if there's more than one person, it's such an emotional time. I've got everything crossed that a miracle will happen for you. Has your hospital pointed you towards ARC?

Also, on the omphalocele... in many cases this is only bowels and can be corrected after birth. It can be linked to several different Trisomies and if it was eg T21, the baby could still be viable. I know this sounds hard, I've just been doing so much reading on this whole topic in the last couple of weeks, there are so many possibilities... I strongly recommend you get in touch with ARC. Any questions, please don't hesitate to ask.

Thank you so much @NoCallerID. That’s so nice of you and it’s just brought a tear to my eye to know I’m not totally alone. I’ve been researching like mad since I was given this news. Plus I’ve just had a call from the midwife at Warwick Hospital where I was scanned this morning to say I’ve got higher chance results for both Downs and Edwards/Patau. I’m level with going through with the CVS. I’d desperately love to keep the baby but can’t bear the thought of it being in distress or pain. I’m praying for a miracle. And can’t thank you enough for your kind words. My thoughts are with you too. Xx

@HopefulSparkler we are Warwick Hospital too and the care we have received from the screening midwives has been amazing.

It's an incredibly difficult decision but you'll get there in the end.

For us, we decided to opt for a TMFR and deep down we know it was the right decision for our baby, our toddler and us but that being said, it's still a terrible time.

If there's anything I can help you with, now or later on, do know that I'm not far and that I'm happy to meet up.

Thanks @NoCallerID your kind offer of support is really appreciated. It’s just a waiting game now. Once CVS is done and results back my husband and I can make an informed choice. Limbo at least offers some hope, even if it is a just a glimmer. I’m lying here, wide awake wondering if the baby will live or die. In some ways I’d prefer to not have to make the decision but I know I’ll have to be brave if the results are positive for Edwards. I just feel so emotionally mixed up. The pregnancy was not planned. I have two gorgeous step kids who live with us. We’ve told no one about this pregnancy so I feel I could just quietly move on but I don’t know if I’ll conceive again and I never knew I wanted my own baby so much. I’ve had a tonne of my own health problems what with having Crohn’s and I really needed a positive focus in life. But it feels like it’s being snatched away. I know I’ll be ok. But feel lost and sad

Get the cvs done. I had 12mm and baby is now 12 years no health issues. Definitely get tested.

What did the bloods they do at the same time come back saying?
Rather than go straight for a CVS they should be offering you a harmony test which is completely risk free an non invasive, at least that's the protcol in UCLH which is a major teaching maternity hospital in london. Its considered 99.9% accuate. I'd already paid for one privately for peace of mind but still went to hospital for the standard scans and bloods where they informed me absolutely everything was wrong despite the harmontly results proving otherwise. The senior obstetrician contacted me, apologised and the sonographer was given a warning for incorrect behaviour.
Ask for the harmony before the CVS.its less risky and conclusive.

Thanks @GraceBelly and @GlamGiraffe I feel having the CVS is the best option in the situation. I know the risk of miscarriage is there but given the fact that my risk for Edwards/Patau came back on the combined test as 1:2, Downs was 1:5. I’m less worried about Down’s as I’d happily raise a child who has a good chance of having a happy and relatively healthy life. It’s the Edwards risk with the exompholos which even NIPT can’t give a definitive. I know it’s a much more accurate test but certainty is what we need to make a decision. It’s now just waiting until Monday for the CVS then, provided they can do it, waiting for the result and hoping that baby survives without miscarrying. This truly is the most horrible situation I’ve ever been in. I feel trapped and scared. So much for happy celebrations

@@HopefulSparkler how are you feeling today? Just wanted to lett you know I've been thinking of you and hope tomorrow goes well.

Thanks For your thoughts and for reaching out @NoCallerID. I’ve battled through these past few days, ended up going to stay at my Mum’s as we’re having building work done at home and I just couldn’t face being around the builders, when all I wanted to do was lie in bed. Today is the day of my CVS. No idea how I will feel, and I’m taking plenty of time off work to just be prepared for whatever happens. I’ve got a que sera attitude towards it now. It’s not something I can control. What will be, will be. X

I have no advice but I just wanted to wish you all the best for today and I really hope there is a positive outcome from the CVS. X

Just wanted to say I know a girl I went college with, her daughter had omphalocele. She had surgery once she was born and she's absolutely fine now.

Thinking of you today hopefulsparkler

@HopefulSparkler I'm glad you can take time off work, it was such a relief for me that my managers have been very understanding and although there's still guilt being off work, I know I wouldn't be any good there. I received the phone call about our harmony test when I was in the office so my manager knows what's happened.... I got a sick note from my gp, they've been very good with the situation and the midwife at Birmingham women's also said to me to just take as much time off as I need. She's been a star!

Pleased you could stay with your mum and just be somewhere you feel as comfortable as possible. I hope someone can be with you today for a hand hold and emotional support, they did take bloods from DH and I in case of genetic testing depending on the initial results from the CVS. We didn't know this before so were pleased my husband was with me and we could do it there and then. Thinking of you x

@hopefulsparkler how did it go yesterday? Did they indicate when you'll get the initial results?

@NoCallerID looks like I’ll be having a TFMR. The Fetal medicine consultant at Birmingham Women’s was absolutely lovely and scanned me thoroughly. She confirmed the cystic hygroma, Omphalocele, clenched hands and bilateral talipes - all very clear signs of T18. She said on that basis she’d offer a termination. I said I’d like the CVS just to confirm. She supported my decision and with the help of a lovely Midwife they performed the CVS as my placenta was well placed. After the procedure she examined the baby on the scan in more detail, this is the hardest bit for me, as its brain and skull is normal and it’s heart is perfectly fine, with four chambers working and beating strong. I know very well that this doesn’t mean the baby wouldn’t suffer so I’m still fairly certain the TFMR is the right thing to do. The initial results aren’t going to be back until Friday - ugh Friday 13th! I’ve spoken to the midwife at Warwick to get my options lined up. I want a surgical procedure as I’ve got complications with my Crohn’s disease that put my body at risk. So, if I can’t have it done in the hospital I’m going to go to BPAS, which the midwife has said is fine, but they may have a long wait. So, we shall see. I’m devastated but feeling very pragmatic. Don’t feel as though I have any other option. Thank you for you kind words of support and to all the other kind supportive souls on this site. X

@HopefulSparkler I am so so sorry, I was hoping you would come back and tell us you're one of the lucky ones.
I know that nothing I can say will give you any kind of comfort but I felt better just knowing I wasn't alone. And if you happened to have Dr. M and midwife K, I know that you've been in the best hands possible and I'm glad that warwick (I assume K or A) have been supportive too. We have mainly seen K and she even called me last week to check on me, which has been amazing. I know exactly how you feel about the heartbeat. When they put the Doppler on after the CVS I broke down as I knew it would be the last time I'd ever hear his heartbeat. Like you, mine/our thinking was very pragmatic and focused on facts, it didn't make it any easier because ultimately we're ending our baby's life. A life that we had an idea of in our head, a happy life. But we must not forget that our babies wouldn't have had this life. And what we do is not because we want the perfect baby, we take on the pain instead of letting them suffer which is nothing but pure love. For us, although we were still waiting for the CVS results, I think the grieving process started after the scan and CVS. I didn't feel pregnant any loner. Which is strange, considering I still struggle to get my head around that I'm no longer pregnant and everything I can feel some kind of wind in my bowels I have this millisecond of excitedly thinking it's the baby kicking.
I've been reading in the ARC forum a lot over the last few days and someone said we're not only grieving for our child that we've lost, we're also grieving for our healthy child that we envisioned we would have, and this is so very true. Obviously everyone deals with grief completely differently, especially men and women. Do whatever you feel like doing. For us, my husband didn't want to know the sex of the baby nor did he want to see him. I knew I couldn't deal with this not knowing so we did find out through the CVS. And as the circumstances happened, my husband did see the baby. He also said he didn't want to go to the cremation, but he will now come because I didn't get the chance to say goodbye in hospital and need this to grieve. I've never forced him to either (although I think both was/is needed) but I know he won't regret it. I'm not sure how this works with BAPS and what your way of grieving would be, but I'm sure the midwives have explained options to you and I hope that once you've come to make a decision they will still give you the support and all the information on charities and groups even if you go through BAPS. I hope I've not talked a step ahead, I know this can be very upsetting so please excuse me if that's how you feel. Have you been able to talk to someone other than your husband about it yet? There's no right or wrong and it's incredibly difficult to reach out, but most people will be understanding and supportive. Please don't think you have to go through this agonising wait on your own. And don't feel bad to set boundaries (I certainly have and I'm sure I've offended a couple of people in the process... but gosh I do not care.) some people know what's actually happened, others only know that we've lost a baby, and then most people don't know anything at all... I'm really not the kind of person to 'send virtual hugs' but please take this as one. And the offer stands if you ever feel like you want to talk to a random stranger who has gone through a similar thing.

@NoCallerID what you say is very true, I do feel better knowing I’m not alone and I value your honesty and the hugs. Outside of my DH, I have shared only with my Mum and my manager at work and that is as wide as I want to share it. I suppose the fact that I have a complex chronic condition has helped me to create a smokescreen to shield myself, I’ve told MIL and other family and friends that I’m having investigations and may need a procedure. I can’t bear people’s outpouring of sympathy for something they’re most likely to never have to experience themselves, and I truly hope they don’t and coupled with the unwarranted pressure once people become aware that I was pregnant that we will go on to have another baby. I’m not saying that won’t happen but if it does, it’s on our terms, and not because of social pressures. I also have to protect my step kids, who need me, as their mum is barely there for them. So I have positives to focus on. I won’t deny the grief for my DH and I. I’ve managed to go two or three hours today without sobbing. I’m desperate to not wallow in pity even though it feels so unfair, but life is unfair. I’ve got to prioritise myself and my family’s needs. And that does involve being able to resume work as swiftly as I can so we can still afford to live. I just want a fast forward button to get me through this hideous time. X

I'm so sorry for you. I had a TFMR in Oct 2019 and it was the worst thing that I've ever experienced.

I just wanted to say - if you haven't already, the ARC charity is really helpful to chat through your options and just get some general guidance and counselling. They also have a forum which was a lifesaver when I was going through the worst of my grief.

Sending all my good thoughts your way xx

@HopefulSparkler it sounds like you're very focused and that's great. Past all this, there is a lot of hope and I'm glad that you seem to have already made the decision to try again. Nothing will ever take this traumatic experience away, and it sounds very cliche that time will heal or help, but it will. I'm surprised with how quickly I'm finding my mind wandering to a future pregnancy (mind you, we've been told of two pregnancies in the immediate family yesterday and I literally broke down despite being absolutely happy for them) but I know that there is light at the end of the tunnel. I used to say people are only being given what they can handle, and although I had a wobble after our diagnosis, I'm going back to thinking it is true. Grief comes in waves, but so does hope. And the hope will start to outweigh the grief. Be kind to yourself. The ARC have got a helpline which I personally haven't used because I find myself being able to express how I feel better in writing than in spoken words, but I have heard nothing but good things about it. And this forum has been a safe place for me to write things down too. Please keep us updated and vent if you feel the need to, no one will judge you for anything. Xx

hopeful I just wanted to offer some support too. I had a TFMR at 16 weeks and it was devastating but I was also very focussed and knew it was the right thing to do. I didn’t have a moment’s doubt and still don’t 14 years later. I was 37 so very similar in age to you. I went on to have two children very quickly but I think it’s no bad thing that you have kept this to a very small circle so you can protect yourself from other people’s pressure or even just their well wishes. I found kind words from friends the hardest to bear in a funny way.

I will say that I cried every day for four months afterwards. Shock and trauma almost more than grief I think. The grief came later.

Now, all these years later, it’s just part of my story. I tell it on this boards from time to time in case it helps. For me, I am whole again and I am happy. I wish you courage and strength as you make this journey and hope for better days ahead.

@HopefulSparkler I’m so sorry xx I know words don’t mean much because it doesn’t change what’s happening. I just hope you get all the support you need to get through this xx

Thanks @NoCallerID @otterbaby @Binterested and @Balajake. You’re also kind and your supportive words mean a lot. I’m still reeling over this whole thing. I’m doing my best to dust myself off and put on big girl pants and say I’ll be ok and do the right thing. But then I just can’t help remembering seeing that little heart beating and body wriggling and I feel like the most terrible person ever to be thinking of ending that little life. Gosh, why does this have to be so hard. I have spoken to my GP, IBD nurse and I’ve sent a long email to my midwife. I know I can get more support, my GP suggested it might be a bit too soon and that I need to get through the worst of the trauma. I keep feeling like this is happening to someone else. How ridiculous?! I know time will help resolve this but looking the prospect of the TFMR in the eye is proving tough. Thanks again, I’ll get there. X

Oh @HopefulSparkler this is exactly what I was/am like. It's the most surreal and out of body experience ever. Numbness, shock, guilt.... it's like a terrible script from a soap opera. I can't say I was ever 100% behind our decision. And I don't think anyone ever is in case of a TMFR. It's heart vs head constantly and whatever you decide there will not be a day in the near future where you don't question whether you have done the right thing. If you feel you can, then take the time. We're all different, I just wanted it over and done with, I was hoping for a miscarriage before to take the decision out of our hands and at the same time I clung onto hope that all the tests had come back wrong. There isn't a day where I don't think about the 'what ifs' but I know deep down that it was the right decision for us.x

Thinking of you x