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

[HopefulSparkler]

Thanks @Balajake. I’ve just come off the phone from BPAS, they are referring me to their team of surgeons for review. In the last 24 hours I have become very frustrated with the NHS. The local hospital is saying they’ll only offer me a medical management and my hospital that provides my Crohn’s care, in Birmingham have also said the same. The midwife at my local hospital has said she’ll make a request to Birmingham Women’s to see if they will do it, but doesn’t know for sure. The nurse at BPAS just said to be, it shouldn’t matter what your circumstances are, you should be able to choose what type of procedure you have. For me, if the baby does have Edwards’ syndrome then I want a surgical termination, because I already have at least one fistula in my bowel going into my vagina which is difficult enough to manage without the risk of delivering a dead baby through it which might cause more damage. I’m literally feeling so low and desperate. I just want this all over with. I’m 14 weeks today and worried the baby is growing day by day and that these abnormalities are only going to worsen. I truly hope you get all the information you need to make the best choice for your termination. Having a bit of control over something is what you need right now. Hugs and love xxx

[Balajake]

I’m so sorry they are being awkward. I was told I could only have medical yesterday but they changed their mind this morning. When will you get your CVS back ?

[HopefulSparkler]

@Balajake I just had the call from the midwife to say it is Edwards’ syndrome. So I’m just phoning all the different places to see how quickly I can get seen. Just want to get this sorted. To do the right thing for my baby. I feel so calm now. It’s so bizarre. I hope you’re ok. Thinking of you. X

[Binterested]

Hopeful . So sorry. And now you know you can move to the next phase. I desperately wanted surgical at 16 weeks and got it quickly at Marie Stopes. All best wishes to you.

[NoCallerID]

@HopefulSparkler I'm so sorry! Sending love and strength. You've got this. It's normal to feel calm, it's like knowing deep down and preparing yourself... Xx

[HopefulSparkler]

Thanks @Binterested and @NoCallerID. I’m booked in with BPAS. They were able to offer a surgical termination next week. I now just want to fast forward and get the right thing done. It really seemed like getting a surgical termination through local hospitals was going to be difficult. Why, I just can’t understand. It’s hard enough being in this situation without choice being taken away! Onwards and forwards. Time to breathe and keep making sense of all of this.

[Balajake]

I’m so sorry Hun and I’m There with you , just wanting it done. I’m here now but jus to emergencies they can’t do till tomorrow. I’ve had my bloods done to cross Mach and it will be done under General tomorrow. I’m a little scared but I know this is what I need to do for my own heart. Honestly before my son 8 months ago I’d never even heard of Edwards or patau and they never asked me with my daughter about screening 12 years ago I’m sure of it. 1/5000 and we are that one 😔 it’s so unfair

[HopefulSparkler]

Oh @Balajake, I’m glad you’re getting everything prepared and it’s only natural to be scared. Is it your first time having a general? That in itself is nerve wracking but I’ve had one three times so I can say it’s not that bad, when you first go under it’s a bit weird but before you know it you’re waking up in recovery. I’ve never been pregnant before so I’m a bit nervous of going through all the hormonal fall out of no longer being pregnant but I’m hoping it won’t take too long as I’d like to try to get back to work and normal as soon as possible, might sound callous but I just can’t afford to stay off work feeling sorry for myself. I agree about awareness of Edwards’ I asked the Fetal medical consultant why there’s such little information and why the statistics seem inaccurate, she said it’s because they don’t get enough data as most pregnancies miscarry much earlier. I’m heartened that this is actually very unlikely to be anything to do with my age and certainly nothing to do with behaviour or anything that we have done. It’s just horrible, bad luck. I’m just thinking positive and hoping for a rainbow 🌈 in my family’s future. Hugs, love and my thoughts are with you. X

[Balajake]

Yes this is my first General and fifth pregnancy. I had a c section with my last as my waters went at 31 weeks. I never noticed a pregnancy fallout probably because the joy of having the baby meant I didn’t notice a drop in hormone.
We’ve gone through all the consent forms and everything I just have to go tomorrow and get it done

[HopefulSparkler]

Sending you many soothing vibes and positive thoughts to get you through tonight and tomorrow @Balajake. I really think the thought of a lot of these things is worse than actually having it done. You’re in my thoughts. And let us know how you are, when you’re ready. X

[Balajake]

I will

[WinterCat]

I’m so sorry.

[Balajake]

@HopefulSparkler my consultant has done many +12 week surgical procedures so she said she was happy to offer me one. She did say most hospital practitioners didn’t offer it because they didn’t have the experience. At first midwife said no till my doctor stepped in. I’m praying for you. This is hard enough without all that stress on top

[NoCallerID]

@hopefulsparkler how are you doing? Thinking of you x

[HopefulSparkler]

Thanks @NoCallerID been to hospital for my Crohn’s drugs today, which was really tough because the clinic nurses are so caring and they were so excited for me that I was pregnant when I was last there and today I had to tell them I’m going for a termination. I’m so glad so few people knew. I just don’t think I could constantly relive the heartbreak that I have to keep going over. And I haven’t even had the termination yet. Consequently I have just been cleaning to try and distract myself from this horrible inevitable thing that’s going to happen on Wednesday. 😰

[Balajake]

@hopefulsparkler. It’s horrible isn’t it. I have ulcerative colitis and had told my nurses my happy news when I had my last infliximab infusion. I’m due to have it again on April 7th. Dreading having to tell her when she asks about my pregnancy.

[HopefulSparkler]

OMG @Balajake I can’t believe you and I are going through such similar things. I’m on Infliximab too. It’s literally been a wonder medicine for me. Keeps my Crohn’s under control. My biggest nightmare now besides the emotional carnage is a flare once I’m the other side of Wednesday. It’s so ironic that the pregnancy has pretty much made all my Crohn’s stuff better now, and now I have to end the pregnancy and face the uncertainty of my health again. Stress certainly doesn’t help me. The IBD nurses were saying it’ll make me stronger, which I know is a cheerfully positive way to look at it but I seriously start to think I must’ve done something pretty horrendous in a past life to deserve the quota of shit situations life seems to throw at me. 🥺 Thinking of you, Balajake, together we are stronger. X

[Balajake]

I’ve been symptom free since starting infliximab in 2016 and had it though my last pregnancy with no issues. Don’t think it’s something you did, we are just unlucky and have to hold onto hope. When you go in just know I’m here thinking of you. You’re not alone xxx

[NoCallerID]

Thinking of you today! Xx

[Balajake]

Sending all my love to you today xxx

[HopefulSparkler]

Thanks @Balajake and @NoCallerID. I’m ok, in quite a bit of crampy pain and bleeding now but the procedure was fine, long day, they didn’t want to give me the oral tablets because of my complications with Crohn’s so they did everything vaginally, the dilapans were in for about 5 hours and were pretty uncomfortable but it all worked. I’m being taken good care of by my DH and Mum. Glad it’s over and feeling a bit like I’ve been in a strange dream for some time now. It’s also all so weird with the whole virus thing going on too. My work have luckily been fantastic, because I’m immune suppressed I’m not expected back in the office for 12 weeks, so I figure this is good healing time. Healing hugs all round and thank you all again for your support. Xx

[Balajake]

Yeah it’s a surreal feeling. Just take it day by day as you’ll feel ok then not ok. I try not to think about it too much as it makes me sad. I know there was absolutely nothing else I could do for my baby , the alternative just made me feel scared. I hope we get another chance and everything turns out ok. My bleeding is already close to stopping but I’m getting immense after pains that wake me up. Hopefully they soon stop .

I’m very sorry Hun, it’s such a hard situation .

[NoCallerID]

@Balajake @HopefulSparkler oh you guys... I really don't know what to say. I just can't believe we had to go through all this...
but we did. And we're still here and we will get our rainbow babies.
This might sound stupid but my experience helps me to get through this whole cv craziness. It's another surreal thing that's happening. We had our boy's cremation yesterday and there were two other couples and one mum and one dad on their own and all I wanted was to give them a hug and tell them that things will be ok but I obviously couldn't.
@Balajake have they given you codeine for the pains? Can you take it with your condition? I hope the pains stop soon.

I'm still bleeding like a headless pig and have stupidly done a pregnancy test this morning, well knowing that it would still be positive... I'm going to wait another few weeks before I do another one, I can't remember when they told me to check and call back if it was still positive... I just want to fast forward a few months and start trying again.
Sending you all my love x

[Balajake]

Sending you hugs too. Been taking ibuprofen and paracetamol. It feels the same as when I ovulate. I get severe pain when I ovulate . Obviously I won’t be ovulating yet . Gonna wait for my real period then get back on the TTC wagon