NT thickness, is there hope for us

[Hattieb26]

I am so weak right now, but having read some very hopeful threads on here I thought that maybe you could give me some hope under my current situation.

We had planned to have a baby, with me being 26 and my partner 35 we felt we were both ready to be parents. We fell first time and I have been so fortunate to have no sickness and I have been fairly energetic and well throughout my first trimester. I have absolutely taken this for granted and now my world has crashed.

I had a scan at 6 weeks to detect a healthy heartbeat and to check for twins as we have them in our family. A healthy heartbeat there we waiting until 11 weeks and 5 days for our next scan. The midwife confirmed how well baby was, active and how she had no concerns.

We then had our 12 week scan at the NHS and my world shattered. With a NT measurement of between 6.1 and 7mm we are in the highest possible risk category. To think I wasn't even going to have the screening at first is awful. I had taken my health for granted and seeing baby so well just 4 days before, no fluid was detected at all.

The fluid extends down babies back, which is the possible beginning of a cystic hygroma. This also puts us right up there with abnormalities.

We have seen our baby today, happily kicking and showing us their hands. That perfect silhouette and the growth progression is just right. The heartbeat strong, yet our baby is potentially very unwell.

I am waiting for CVS, but I wanted to post this for some hope but also to remind people not to take their health for granted. I had assumed my youth and my physical being to be enough to have a perfect child. I hadn't even realised this could happen to us and now it is, I'm still hopeful this baby will be OK.

The NHS gave me nothing but a termination leaflet and a piece of paper to confirm the abnormalities, they even gave me my scan picture for free out of sympathy. A quick in and out visit for formalities turned into the worst day of my life so far.

@Hattieb26 so sorry to hear you’re going through this. It is so unfair 😞

I haven’t had experience myself of NT being very high risk. Lots of other factors but not NT... Just didn’t want to leave you without a response.

I’m really praying there is hope for you. X

Thank you so much. We’ve such a long road ahead but I'm so hopeful. I don't want to give in yet x

@Hattieb26 I’m so sorry to hear of your situation, it is devastating to get worrying news at your 12 week scan :( I had similar with my son - his NT measurement was 4.7mm and we went through various tests including an amnio and heart scan, all came back ok. We were told the NT measurement was likely ‘just one of those things’ but it was such a traumatic time. He arrived safely last July. I know that your baby’s NT measurement is higher than ours was but I have seen positive outcomes still for at that level of measurement so still hold on to hope. I’ll be thinking of you and praying for a good outcome. Have you got your CVS booked? Hugs xxx

We have read some stories with NT measurements as high as 11 that babies have managed to be born healthy. My goodness I've never been so hopeful in my life that this is just a glitch and after our tests we can continue to have hope.

I am currently trying to book the cvs in privately with hopes it'll all go through quicker. The NHS have such a wait for tests at the moment. It was truly awful on Friday and a day I'll never forget. I'm so pleased your baby was one of the healthy ones and the initial concerns were just worry and nothing else xxx

@Hattieb26 hi lovely - how are you doing? You’re absolutely right - I’ve also read positive stories with higher NT measurements, hoping and praying for you.

So sorry to hear of the delay in getting a CVS through the NHS - I would be doing the same with having it done privately. We had our amnio done privately actually as I really wanted a certain fetal medicine specialist to do it. It was money well spent for the reassurance it gave me. Hope you can get in v soon as the initial results normally come back within 3 days of the procedure Xx

Hi Hattie,

My first child measured 7.3mm, so high that the trainee consultant who participated in my care during my second pregnancy did not believe that I was correct until she read it in my notes.

My first child is a healthy 10 year old boy who loves baseball (we’re American but he was born in the UK), bike riding and video games. He has no lingering health concerns related to the NT reading. We are extremely blessed.

I would recommend a private CVS like you mention, if only because the waiting is excruciating.

One thing that I found helpful is to flip the statistics. For instance, the told us that we had a 1 in 4 chance of Edwards or Patau. I tried to remind myself that also meant 3 in 4 chance that we did not.

It’s very hard, and my thoughts are with you.

Hi there thank you for checking in on me. That's so kind of you xx
Today we went to Harley Street to the FMC and they were absolutely wonderful. They did so many checks and it was so thorough. We heard babies heartbeat today and they had been ticked off as normal on all the tests... apart from NT thickness.

I had the amniocentesis today at 12 weeks and 4 days, I didn't think it was possible but they did it so carefully and actually I found the experience completely painless. An unusual sensation but holding to the thought of it helping my baby was all I cared about.
I did a harmony blood test today as well so we've done everything we can at this stage.

Results will be in at Friday 6pm. We will sit tight until then, baby has grown though and was nice and active for us today. Bless them, I've seen them so many times. It is strange to think if your baby is deemed normal you only technically see them once more until birth!

I feel a sense of relief today but that is because the fluid looked like it may of reduced slightly, but we cannot be sure until we have the syndrome results back. Then we face the next lot of tests for babies organs and structure.

I feel strength, but I hope it holds our xxxx poor babies 😢 I'll never take my health for granted again. Xxx

@TejasGal thank you for this xx
My partner did exactly what you said and he flipped the chances and it does really make you feel better.

I am still horrified that the hospital who diagnosed this problem haven't called me to see how I am... it was only Friday I left them in floods of tears. They gave me a termination leaflet and no hope.

We've had the tests we can have at this stage and now we wait!! :( the amniocentesis went well and I didn't feel any pain, I was so pleased with the way I was dealt with at the private clinic (I could get used to that lol)

I'll update when the results come in.
Xx thanks for sending your hope and support

@Hattieb26 I am sorry to read what you're going through but I'm also pleased to read you feel like the care you received at the FMC was very good.

I am also booked in for a CVS at the FMC on 01/06... can I ask why they gave you an amino and not the CVS even though you're only 12+4? I'm sure my procedure will be carried out by a lady called Martha, was it her that did yours?

Fingers crossed your results come back ASAP and all clear x

@Colinthecaterpillar35 evening xx

So it was carried out by Dr Martez, she is a consultant I believe but to put your mind at rest as best I can, the procedure was completely painless. She never said why she chose to it through my tummy, perhaps its down to how clear she can see or perhaps each consultant has their own way of doing things. They were very to the point and efficient. You are going to the absolute best place for it as these people do it all day every day. It lasted all of 2 minutes and it was painless for me.

I was more in favour of it through my tummy rather than my lady bits as I am so squeamish with the clamp etc. The things we have to do :(

I just have a sickening wait now for the results x

@Colinthecaterpillar35 and just a thought too, it was definitely a cvs I had but it was through my tummy rather than vaginally. I think I may of gotten it confused but I thought that a needle through the tummy was the amniocentesis, I've probably gotten this wrong xx head is all over.

@Hattieb26 we had a NT of 7.0mm diagnosed at 13 weeks with possible hydrops. We were referred to UCLH within 48 hours and had a further ultrasound (abdominal and transvaginal) and a CVS. Both came back clear. We then paid for a private heart scan / anomaly scan at 16/18 weeks before having both scans repeated by UCLH at 20 weeks. All has come back clear. We're continuing to have growth scans (I'm 32 weeks now) but they haven't found anything beyond the initially high NT. I have found the whole experience super traumatic and it's still difficult to be positive but we're getting there. My first experience at the local hospital was also awful, really really awful but I have found UCLH to be amazing!

@Colinthecaterpillar35 I've just checked back and I was with Dr Marta Perez today and she was brilliant. You are in safe hands xx

Hello, sorry for what you're going through and I wish you good luck for your results on Friday.
One thing though: the scan you got given isn't out of sympathy its just standard for the 12 week scan on the NHS. I had mine today and left with one photo.
Also, I wouldn't expect the hospital to call and check up on you but I would expect a call from your midwife at some point.
Hope it all works out for you x

@milkshakeandchips5 thank you for filling me in on your journey so far.

My experience at my local hospital was traumatic too. It frightened me so much I had two days in bed and couldn't eat. They had basically told me my baby was in serious danger. Something I was absolutely in denial about and until we have the screening we shouldn't judge.

It seems to be a very common thing this NT thickness. In my mad desperate research I found an article from a Dr from Japan who confirmed they do not use the NT thickness as a type of screening as it is so commonly nothing to worry about. They in fact do the blood test and only get you worried if necessary.. the article commented on how they thought Europe and the United States still did this test and hope they will soon follow.

This worry is like nothing I have ever experienced. I do not expect it to go, just like you have explained even at 32 weeks you are still so worried. I've ready so many stories of woman in this situation, awful.

I hope so much my baby can have a similar story to you. I've also read some very sad ones on here. You find yourself hoping for the happy ending and you scroll on further in the comments and read heartbreaking updates. Xx

@Horehound thank you for your well wishes!
The consultant was supposed to call as nobody has talked me through anything yet. I only knew to get a cvs thanks to these online forums x
Also the hospital i am at charge everybody 10 pounds each for a photo, mine was chosen and printed for me as I was too busy crying to go print one. I was told it was free as a gesture.

Not at all denieing the NHS of being great in places, but unfortunately my experience was really quite bad :( I wish it wasn't, but its cost me rather a large fee in going private today x

Ah sorry ok I misunderstood.
You're going through the mill. Got everything crossed for you!

@Hattieb26 I truly know how you feel and it's unbearable, I wouldn't wish it on anyone. I remember waiting for results and feeling like every minute was lasting an hour. I couldn't sit still or sleep or do anything except read every possibly study / forum available. Our blood results were also awful with 1:5 for each of the trisomies.

I don't want to give false hope as I've also seen the terrible outcomes and I've read enough to know that the higher the NT the greater the chance of an adverse outcome but there are good stories too (google a blog post my arosieoutlook if you haven't already found it).

Try to stay busy if you can, it helps pass time! Sending you all the good thoughts. I really really hope you get a positive outcome! Let me know if you need someone to vent to.

Hi,
I just wanted to leave a comment as ‘hope is not lost’. My wife and I have just welcomed our beautiful baby daughter into this world and she is perfect. At the 12 week scan we had a high NT measurement of 4.2mm and received all the negative blurb from the nursers etc. We found that at the second scan the NT had reduced and all subsequent testing was positive in the sense that nothing abnormal could be detected.
We also had the same with our first daughter - a cystic hygroma was detected at the 12 week scan but had disappeared by the next scan- she is now a very healthy 5 year old.
So there is hope - stay strong

@Dad81 thank you for the hope x
The poor little sausage in there I'm just enjoying every day with my teeny tiny bump and really hoping the results on Friday evening can get us over the first hurdle. Its such a scary experience and I am so pleased it didn't put you off having your second, or perhaps third one day.

We're truly blessed and to of even had a baby at all is special, even if they may be a little worrying at the moment. Every other health check they did on baby that day was marked down as healthy and normal. It is just the NT thickness they are concerned about, it had also reduced ever so slightly. I hope we too are in the small percentage of the healthy baby category x

I've been emailed to say it is 100% a down syndrome.

Ahh @Hattieb26 I'm sorry that you didn't receive the news you hoped for. I don't think anyone will be able to say anything to make you feel better right now and I don't envy the conversations you will be having. What you do next is so very personal but you do have options. There is no right or wrong next step and don't let anyone tell you otherwise. Sending you all the good thoughts I possible can - keep talking to us if it helps!

Thinking of you @Hattieb26 xx

Sending love @Hattieb26 x

Sending lots of love to you @Hattieb26 I’m thinking of you 😘