Nuchal Translucency/ Fold measuring at 7.5mm at 12 week scan.

[LilyJessie]

Hello everyone,

I'm really nervous about writing this... Mostly because it makes it real.

Our first pregnancy (concieved in first month) was heartbreakingly ended because of a major fetal anomaly (Gastrochisis) and extra complications diagnosed at our 12 week scan.

It took us 8 cycles to concieve again (which I found quite stressful), and we were over the moon and in love already from the moment we found out in December '21.

Today we had our first scan, and the sonographer said "I am so sorry, I don't know why this keeps happening to you", and she told us there is lots of fluid around the baby, and their Nuchal Translucency measures 7.4 mm (over double the "safe" amount). This means we are high risk for chromosomal abnormalities.

(In our first pregnancy, the Nuchal Translucency measured 1.5 and "low risk".)

We are having a CVS procudure on Wednesday to provide more clarity.

I was just wondering if anyone else had any experience I could draw from? Their results from such a large NT measurements? No one in my family has had anything but easy and healthy pregnancies, and I'm finding the bad news really hard.

I'm just, so frightened and scared. I really want to have my own family.

I'm a 30 year old, non smoker, non drinker, none drug user who takes prenatal vitamins... but pregnancy for us, has been unkind. I just don't understand why it keeps going wrong.

@LilyJessie aww I’m so sorry that you’re having such a worrying time - and huge condolences for the loss of your first baby 💔

I didn’t have exactly the same situation but our baby had an increased nuchal measurement of 4.7mm and we had all the antenatal tests. Nothing abnormal was found during my pregnancy and he arrived safe and well. At the time I did see some positive stories from those with higher NT measurements…there were sad stories too of course (and likewise for the size of NT our son had) but there were also positive ones so try not to lose hope just yet (but completely understand how you must be feeling). Sending you a big hug xxx

@jmm499

Thank you so much for replying. I really appreciate your kind words.

Our first baby was a little girl, and we called her Lily. We miss her every day.

I am trying to be as calm as possible but I just feel so helpless. Almost like, what am I doing wrong?

Thank you for sharing your story with me. I am so very happy your baby was okay, its so awful to worry about them not being okay. I have read positive and negative stories too. Just have to see how things go over the next two weeks.

I feel like an awful person that I would consider ending the pregnancy if they had a chromosomal problem. I worry it would make me an awful mother and person, expecially when they are so wanted and loved. I can't believe I'm faced with this decision again.

Thank you again xx

I’m really sorry that this is happening to you. I just wondered if you were aware there is now a blood test (NIPT) that is something like 99% accurate as to whether your baby has downs or other chromosomal abnormalities. You shouldn’t need to have the CVS which is an invasive procedure

@flyingskunk

Hello,

Thank you for replying to me.

I have read about this test and about harmony tests, but no doctor/ midwife or consultant has explained any of this to us.
I have read that these tests don't test for as much/ aren't as accurate, but again, that's doctor Google... and not a really person.

I feel so lost and alone... like I got this news and have spent the weekend fretting and panicking because I don't really know what it means.

The midwife, lovely as she was, told me "I'm sort of learning on the job", and didn't really have the answers we needed.

@LilyJessie oh goodness I’m so sorry you’re feeling so lost 😢 You must have such grief at the loss of Lily 💔

I have a friend who lost her son due to a fatal diagnosis in pregnancy and then lost her second daughter due to tfmr, I’m sure she’d be happy to share some supportive sources you might find helpful should you need them?

In terms of NIPT - we had this (it was when our son’s high NT measurement was picked up actually as we had it ahead of the 12 week scan) - and it came back as low risk for the 3 most common trisomies. However because of the increased NT we were advised to have further testing if we wanted to be sure and look at all chromosomes. I was told the NT measurement could be something or nothing and whilst I could take the low risk NIPT (I think it’s very high accuracy for T21) and see how the subsequent scans went, I felt I needed to know for sure. It’s a very personal decision though.

Please know that you are a wonderful mother - you are carrying the burden of heartbreaking experiences so that your baby doesn’t suffer. I was in utter turmoil as I was thinking about how things might end for us 😭 I realised that there was absolutely nothing selfish about the decision if we decided that was best. It was a grief and heartache I would need to bear even if it was the right decision. So please know that I can see you love your babies so much. I hope you can find some support to help you at this time - did you have any experience with ARC when you lost Lily?

Sending you so much love xxx

[quote jmm499]@LilyJessie oh goodness I’m so sorry you’re feeling so lost 😢 You must have such grief at the loss of Lily 💔

I have a friend who lost her son due to a fatal diagnosis in pregnancy and then lost her second daughter due to tfmr, I’m sure she’d be happy to share some supportive sources you might find helpful should you need them?

In terms of NIPT - we had this (it was when our son’s high NT measurement was picked up actually as we had it ahead of the 12 week scan) - and it came back as low risk for the 3 most common trisomies. However because of the increased NT we were advised to have further testing if we wanted to be sure and look at all chromosomes. I was told the NT measurement could be something or nothing and whilst I could take the low risk NIPT (I think it’s very high accuracy for T21) and see how the subsequent scans went, I felt I needed to know for sure. It’s a very personal decision though.

Please know that you are a wonderful mother - you are carrying the burden of heartbreaking experiences so that your baby doesn’t suffer. I was in utter turmoil as I was thinking about how things might end for us 😭 I realised that there was absolutely nothing selfish about the decision if we decided that was best. It was a grief and heartache I would need to bear even if it was the right decision. So please know that I can see you love your babies so much. I hope you can find some support to help you at this time - did you have any experience with ARC when you lost Lily?

Sending you so much love xxx[/quote]
@jmm499

I do have so much grief for her, life seems so unfair for these little babies who have done nothing wrong.

We have come back high risk and a 1:5 chance of all the trisomes... So we are having the CVS and will take it day by day. We should know by Friday. I am hopeful, but realistic too.

Re Arc had a bit to do with them, but not much. I have contacted them now though and they've added me to their forum.

Your message made me cry (in a nice way)... Thank you so much. You will never know how much they have meant to me 💗 xxx

Aww @LilyJessie I am feeling so sad for all you’ve been through before and for what you’re going through now. I had miscarriages before our son and I was holding immense grief for the first one in particular as I’d seen the baby alive and really felt that I’d known her. I found an energy healer who helped me to process a lot of stuff and made me so much stronger. I think getting the right help (which is different for everyone) will help with processing some of the grief for Lily but of course it will never go away. I really hope you can find that help ❤️ You have been through something so traumatic - a decision that you had to make although what was the alternative? It’s such a harrowing place to be and I am so sorry you went through that. And also that you’re experiencing such worry with this pregnancy, it seems so very unfair indeed.

I am keeping everything crossed for a positive outcome for you xxxx

@LilyJessie I’m so sorry to read your post. I just wanted to let you know that I am going through something similar. Before Xmas we found on our 12 week scan that our baby had a high NT reading of 4.9.
We saw a consultant that afternoon who recommended CVS. She told us to go away and think about it. However, I’m in medicine and said there was nothing to think about and went ahead the next Wednesday. Fast forward though the worst weeks of my life and got all clear on chromosome abnormalities. Just waiting for 20 week scan in the next few days.

My DH and I discussed all outcomes and please be assured whatever you decide won’t make you a bad person/ mother.
I know the pain of getting this news. I couldn’t function for the week following the scan and getting the first clear results. Look after yourselves.

@jmm499 @flyingskunk

Hello,

Just wanted to tell you both, that we had a diagnosis of turner's syndrome today, with an unlikely prognosis they'll make the full term pregnancy.
They also said they have a poorly heart.

We are totally devastated, but I wanted to reach out and say thank you for your support.

We have made the decision to end our pregnancy and will be going through this the next week or so.

Your kindness will stay with me forever 💐

Xxxxx

@Betterdays2122

Hello,
Everything crossed for your 20 week scan 💗🤞
Sounds really positive though, as my midwife said that she has lots of success stories for measurements under 6 mm.

At our CVS the nuchal fold had increased to 12mm, and the consultant was honest and said, they don't anticipate the pregnancy lasting.

We found out today our baby had turner's syndrome, a severe heart problem, and a high risk of not making the pregnancy. They're very poorly.

We have decided to end our pregnancy dream for our little girl. Second baby we have lost to a really rare condition that has nothing other than rubbish luck to be the cause.

💗 Thank you for responding to this xxxxx

So so sorry

Oh my goodness @LilyJessie I feel heartbroken for you 💔 I am so very sorry 😢

I will be thinking of you so much in the coming days and weeks. You are carrying the pain and heartache to make the decision that’s right for your little girl - you are amazing, you are so strong, you are a wonderful mother. Sending so much love to all three of you - Lily will take care of her until you meet again xxx

I’m truly sorry to hear this and send love to you and your family. Xxx

Oh I'm so so sorry for you, made me tear up reading ❤️ it's so cruel. I'm so sorry.

@LilyJessie So sorry to hear your news. I am in a similar position due to baby (I have not brought myself to ask if it is a girl or boy yet) being extremely poorly. I will be taking the first tablet to begin the process tomorrow and will be admitted on Monday to give birth (at 18weeks). Here if you need to talk x

I’m so sorry to hear your news you must be heartbroken but it absolutely is the right decision.
Thinking of you at this terrible time xx

@LilyJessie I’m so sorry to read your news. It’s incredibly cruel for this to be happening to you again.

I also had a little girl, Zara, who was diagnosed with Turner’s syndrome via cvs. I also discovered some abnormalities at the 12 week scan, and subsequent scans found a large hygroma and fluid in her heart. We also decided to terminate the pregnancy.

I’m so sorry you are going through this too. Be kind to yourself.

@LilyJessie I am so sorry to hear this. I’m thinking of you and your family. Life is so cruel sometimes.

@LilyJessie I just wanted to say that I'm sorry and I had the exact same diagnosis as you and also decided to TFMR.

I will always feel sad a little the little girl we lost, but we have had two healthy DC since. I really hope the same happens for you x