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NT 5.6mm at 11 week

73 replies

Balajake · 04/03/2020 13:15

I just need some hope, some positive outcomes or similar stories to mine. I’m booked for further tests and scans on Monday but I just need to understand what we’re are facing here . I’ve attached my scan report if it helps but the high NT doesn’t seem to be the only issue

NT 5.6mm at 11 week
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Balajake · 09/03/2020 18:55

I will thanks

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WineGetsMeThroughIt · 09/03/2020 20:28

Hi @Balajake - I wanted to let you know that I can totally relate to your situation. And I've had a positive outcome. About 7 years ago I was in the same spot you were. I went for the 12 week measurement tests and baby had an NT measurement of 5.6 and combined with my blood work I was given a 1:13 chance the baby would have downs. He also had a large cystic hygroma that stretched from his head down to his hip area. I found most of the scan and hospital staff to be very blah about the whole thing. Just something that happens, and then life goes on with whatever decision you make which really wasn't helpful. I had a CVS done which I found to be excruciatingly painful afterwards, so you've done well already for getting through that. A week later we were called with the results. No downs. No positive results for any of the other syndromes that he could have had. What a relief! But they were concerned about his heart. So I continued to have regular scans every 2 weeks where they closely monitored his heart which was actually really nice because I suffer from anxiety and it was just good reassurance for me. Fast forward to now and I have to most perfect healthiest cleverest little boy. Completely normal. We have no idea why his initial tests came back so high, but the most reassuring thing that really made the most sense to me was told to me by a women who did one of my scans. When I explained all that had happened and asked her to check how the cystic hygroma was doing she told me that she saw stuff like this all the time, and so often the babies lymph nodes that drain fluid are still forming, and the baby is still forming so there's plenty of time for things to normalise and that the immature lymph nodes are often thought to be the cause of cystic hygromas. I don't know how much truth there is in that, but I took it and ran with it as it really just made the most sense to me. I'll be following this thread and thinking of you. Fingers crossed everything goes ok for you too.

Balajake · 09/03/2020 21:33

@WineGetsMeThroughIt your post gives me so much hope. When he said he didn’t think it was Cystic Hygroma I had ask him “wait, you don’t think it’s CH” I just didn’t ask why because comparing my scan with others it looks exactly like it but he’s an expert. He was so nice and made me feel at ease. He kept it real though and said 33%-50% chance its Chromosomal because of the size. I’m clinging on to any hope there is but could I ever be one of those lucky ones ???

I had hoped I’d go today and it had all disappeared but it was still there. No hydrops though according to him as I specifically asked. I’m so glad you had a good outcome. It’s good we share these things because it gives a greater understanding to these conditions. Before Wednesday I never even knew this could happen

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Balajake · 11/03/2020 14:39

Well my story ends here. The midwife called with my the results and it’s bad. Edwards syndrome and I’m gonna get a call later to book my termination. I feel like I’ve let my baby down so badly. Haven’t even called my husband yet because what do I say ..

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HopefulSparkler · 11/03/2020 15:35

Oh no, I’m so very sorry to read this @Balajake. You absolutely haven’t let your baby down. It’s just horrible, terrible luck. I’m a bit behind you but anticipating the same phone call, it’s such a totally shit situation. You have to do what is right for you, your baby and your husband. I am sure your husband will fully support you. I, along with many others here are totally here for you, I know online support isn’t the same but genuinely I want you to know you can share how you feel here without fear of judgement. And if a friendly stranger who is experiencing something similar can help at all, I’m here for you. Flowers and many hugs. Xx

Balajake · 11/03/2020 15:43

I knew it was something chromosomal, I had hoped out of the three it would be Down’s and my little baby would have a chance. I asked gender but she said she wouldn’t know until they get the full report. I feel like it’s a girl as I’ve been sensing it all through . I just need it over sooner rather than later as it’s not fair on the baby. I want to give him or her a name though and talk through my options for burial as I don’t know what happens as I’m only 12 weeks

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Treaclepie19 · 11/03/2020 15:53

I'm so sorry @Balajake. I'd hoped you would be a lucky one.
Even though our little boy was born at 22 weeks because it wasnt after 24 weeks we didn't have to register his birth and death. We did have a funeral though that the hospital organised.

Have they discussed you going in to discuss everything? I'm shocked they've done this over the phone.
I'll be thinking of you. Message if you need anything or if I can help at all.

HopefulSparkler · 11/03/2020 15:56

Try not to rush everything. Whilst Edwards syndrome may mean survival chances are poor, it is unlikely your baby is currently in distress or pain. At 11 weeks, it is still very small. Don’t beat yourself up. The team that will care for you and guide you through the TFMR process will explain all the aspects of chaplaincy, naming and burial or cremation, whatever is best for you and your family. Nothing is going to make this easy, and god knows, I’m all too aware as I’m looking down the barrel of the same gun. Hold your husband close and cry. You both need to grieve. As another lovely poster commented on my post, we are grieving on more than one level, loss of a life we were expecting and the loss of a healthy baby. It’s enormous and I just want to reach out and give you as much reassurance as I can. Sending so much love. X

Balajake · 11/03/2020 16:20

Hospital called and talked though the process. They are going to try and get me in tomorrow for first tablet 😔 then back in 2 days for the final step . I think if you @Treaclepie19 and @hopefulsparkler Weren't here I’d find this a whole lot harder. I’m 12 weeks today, this is the point where you tell everyone your happy news, yet here we are and even though I have no choice I feel a sense of shame as I’m actually having an abortion 😞 it all feels like a cruel experiment.

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HopefulSparkler · 11/03/2020 16:35

@Balajake please don’t feel ashamed. No one is ready for this process. It’s bound to feel like it’s happening to someone else. I know that’s how I feel. I felt totally robbed of the chance to share the joy of being pregnant. Time will help, I know this feels unreal and I know it’s a very dark time. If you want to message privately, please do. I’m here for you. X

Balajake · 11/03/2020 17:07

Thankyou and I’m here for you too @hopefulsparkler

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Treaclepie19 · 11/03/2020 17:16

@Balajake the feeling of shame is very common in TFMR.
I recommend speaking to ARC. They're very good at putting everything into perspective xxx

Balajake · 11/03/2020 17:39

Yes I think I need some counseling for certain as I have too much whooshing round my head right now

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otterbaby · 11/03/2020 18:03

So sorry to hear your news 😔 I lost my daughter to TFMR at 16 weeks last October. I know that some paperwork refers to it as an abortion but it couldn't be more different...please do not feel ashamed, you have absolutely no reason to. It's a horrendous thing to go through and beating yourself up about it won't make it any easier.

Things to think about - after you deliver your baby, you have the choice to see them. Make sure you have a good think about this, I'm on the ARC and SANDS forums and see a lot of people regretting not ever seeing them because they were too upset. You can also opt for them to take photos to keep on file whenever you're ready. We brought a little blanket for her to be wrapped up in so it felt like at least we were giving her something to keep her cosy. As for burial, we opted for cremation and the hospital arranged for a little service at the local crematorium. It was open to anyone who had been through similar at the same time but my husband and I were the only ones there.

As mentioned below, ARC is a fab resource, the people on the phone are so lovely and helpful. And the forum is a good place to speak with others who have been through similar.

Sending strength your way xxx

Treaclepie19 · 11/03/2020 18:08

I'd second that. We held and spent some time with our son and gave him his brothers blanket and teddy so he had something of ours.
I'm so sorry you're having to go through this xxx

Balajake · 11/03/2020 19:22

Thankyou. These are things I hadn’t thought through yet. Seeing my baby, I hope I have the strength.

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Treaclepie19 · 11/03/2020 19:32

I didn't think I would have the strength. Even at the time, I was nervous. I'm so, so glad now that I did.
It's a very personal decision though and you must do whats right for you.
The hospital were amazing with us. Take things at your own pace.

NoCallerID · 11/03/2020 19:46

@Balajake I am so sorry this is the result you got. There are a few things I would like to say - you're not having an abortion! You're not 'getting rid of a unwanted baby'. Please don't look at it this way. What you do is protect your baby. And this sounds hard and almost unbelievable now, but you do. You're taking on the pain that your baby would have and it's the most difficult and at the same time bravest thing to do.
I agree what the lovely ladies before me said - think about your options after the birth.
Even if your partner disagrees, you need to do what you think is right because there is so much regret of not doing certain things like seeing and holding your baby. My husband didn't want to find out the sex, name the baby, see him or go to the cremation. I NEEDED this. And so I did. Well, the cremation is next Wednesday but he's coming. We too brought personal things - my brother in Germany made a small and a bigger heart out of my old plum tree and sent them over. My sister (midwife) got me a little cosy wrap they give out at their hospital for babies born too early. The nurse wrapped our little boy (14 weeks gestation) in it and put him in a little crochet cot with a blanket on. The little heart went into the cot too and we placed his little hand on it, the big heart will stay with us forever and I sometimes get it out and feel so close to him. We also got a memory box with his tiny footprints, a birth certificate with his details and even weight and an SD card with photos and other things. We were offered a few options for burial/cremation but we decided that it's for the best that he's cremated with other little babies which as naff as it sounds gives me so much comfort knowing that he's got little friends and isn't alone. The ashes will be scattered in the baby garden by the crematorium - it's in the woods and it's lovely and peaceful.
I have given birth to our living child naturally with only gas & air but I knew I would want more pain killers as my mindset wasn't the same - please don't hesitate to ask for anything, don't torture yourself if you're in pain. Our birth didn't go according to what I had hoped in these awful circumstances and especially the time after he was born and I was still spaced out from pethidine is a bit of a blur despite remembering everything if that even makes sense. I couldn't cry. I so wanted to cry! I wanted to sob and let it all out instead I just looked at him, and put my hand on my partners shoulder whilst he kept breaking down over and over again, apologising to 'his little man' which broke my heart but I think this is what my husband needed. And I'm glad he got to hold him and touch him. We don't talk about it, my husband unfortunately doesn't talk about things like this and just let's me talk but doesn't add or share, so I'm not sure but he's not ever once said he regrets seeing him. Many of the thoughts I've shared on here I haven't even shared with him because I can't take another 'yes, I know.', so sorry if this is too much rambling about my own experience, I suppose it helps me writing it down. This all is only just 12 days ago, it feels like yesterday but also a long time ago. Everything comes in waves and whatever you feel is ok. And whatever you do is ok. Be gentle on yourself, you have not let your child down. Nor anyone else. You have been let down by nature and unfortunately these things are unavoidable, something we/or at least I didn't appreciate until it was me. There are times when I sob, when I stamp my feet on the floor and just question everything. It genuinely is like it's someone else's life and sometimes there's this haze and you feel ok and then it hits you again and you just feel numb.
I've signed up to the ARC forum and I've spent so so many hours reading in the last few days and nights and although it doesn't take away any of my own feelings, it helps. It helps because sometimes I can't find the words to explain what and how I feel, I can't even get the thoughts to match my feelings and then I read something and think yes, this is exactly it, I can't believe that someone else knows how to express MY feelings and it's upsetting knowing that other people have gone through it, but it helps so so much. And I know that I will share my story on there too, right know I'm only able to keep my concentration up for a limited time but every thought that I put into writing seems to lift a tiny little weight off my shoulders. Please do the same if it helps you. Don't hold back on here, no one will judge or take offence to anything. Many people on here have been through similar things and we all get it. The ups, the downs... Take your time, and even more so take care of yourself. Be selfish. Say no when you feel like it and don't try and please or protect anyone. You've got this.

@Treaclepie19 I read your story the other day - such a brave thing to share. I don't think I'll ever be able to do this like you did but I want you to know that there are people out there who appreciate this, they might not always say but I feel you need to know this...

Balajake · 11/03/2020 20:15

@NoCallerID I think you’ve summed up all my emotions . I’m so sorry you went though this.

I will look to sign up to arc now

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Treaclepie19 · 11/03/2020 20:26

Thank you @NoCallerID. So much Flowers
That's why I shared our story. So people could feel less alone and know that other people were sharing their pain.
I'm so sorry for your loss ❤

I agree about the pain relief.
I'd had just gas and air with my 4yo but for the little boy we lost I had gas and air and morphine. I was very sick after but I needed it just to help me through.

MisssC3025 · 12/03/2020 08:52

Just caught up on this thread. I'm so sorry OP 😔 💖💙
I hope you get through the next few days with strength. Never feel like you're doing the wrong thing. It's clear that you care and love this baby so much you're doing what many mothers would do to protect them and cause them less pain.
Will be thinking of you Thanks

Balajake · 12/03/2020 11:41

The midwife called and said they are willing to do a surgical procedure as early as tonight. I’m quite tempted because it’s quick and I will be home and it will be done. I have an 8 month old son so the thought of being in hospital overnight waiting for the baby to pass is giving me anxiety.

The plan was to have another child soon after my son so that he would have a sibling close in age. It took a year to become pregnant with Edison and only one try with this baby. I hopefully want to try again as soon as possible so I have reservations about damage being done if I have a surgical.

I hope I don’t sound cold wanting to try again quickly. I just feel so sad this baby won’t be mine I don’t know how to think about anything else but trying again

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NoCallerID · 12/03/2020 11:53

@Balajake Personally, I think it's great you're already wanting to try again ASAP. I was debating all last night whether to add another comment but thought it would be too early and didn't want to step on anyone's toes. The thing that surprised me the most in all of this was how much positivity and hope I have within me despite being absolutely heartbroken. We too want to try again soon. This doesn't mean that we ignore or move on, it's not the same baby we will have, but it's a new chance and I think it's the best therapy to have something to look forward to.
With the surgical procedure, do what you think is right. Consider what you would want after and how this would impact your decision. Would you be able to move on not seeing your baby? This might sound morbid, but for me it was one of the most important things. Otherwise I probably would've doubted he actually ever existed. But I can fully understand that you want it over and done with. I'm not sure if it's the easy way out in the long term, I have no experience with procedures like this. A medical can be quite quick, but it can also take some time. Would you be allowed home straight after the surgical? Your 8 months old will be fine either way. Xx

otterbaby · 12/03/2020 11:55

That's completely understandable - it might not be just overnight either. I had to stay for a full 2 days as my temperature spiked after and I had to stay hooked up to an IV for a while and be supervised until it became normal again.

It's not cold at all. I gave myself 2 months to let my body (and mind) recover but I knew the only way I would be able to heal was through another pregnancy. We were lucky to get pregnant our first month trying and now I'm 10 weeks pregnant. It's a hard road though, pregnancy after TFMR. It's difficult to be excited for your new baby whilst grieving your last one.

No advice I'm afraid regarding the surgical procedure - I had heard of the risk factors as well which is why I opted for medical 🙁

Only you can choose what's best for you and your family xx

Balajake · 12/03/2020 12:07

Going in between 2:30 and 3pm to discuss. They said it may be tonight depending what labour ward and if any emergencies come in. I’m leaning towards surgical . I will let you all know later what’s going on xxx

And thankyou again. Have a feeling o will be sticking around here

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