Results from NT test 4.7mm

[Festivemovie]

Hello after 9 miscarriages I am pregnant with baby number 10. I am 43 and we where shocked to find out at 12 week scan two weeks ago our NT measurement was 4.7mm we went to fetal assessment unit last week in manchester to be rescanned and consultant said baby has a 10% chance of survival. Baby has a cystic hygroma now of 6.9mm and skin edemas. Next wednesday we will be rescanned and have the amnio I am still awaiting the results of nipt. I know 10% is a very small chance but has anyone on here gone on for baby to be okay after being diagnosed with these things? The consultant has now discussed tfmr and I am not in a good place and tearing myself to pieces. Has anyone had tfmr at 43 and actually gone on later to have a healthy baby. I'm not even sure if this is the right place to post but I am beside myself with upset right bow can anyone help me with advice or to put things in perspective. I am now 14 plus 3 thank you mel xx

Xxx to you...I've been there ARC antenatal results and choices) are wonderful charity who can offer support.
I know your pain and you will get through this whatever the resultsxxxx

Thank you makinglists xx I will have a look. I'm a little calmer tonight after crying for 4 days solid just feel so lost. My dear mum died suddenly last year, and with covid I feel so isolated I know everyone is going through it though x

Hi, I am so sorry to hear you are going through this. I've had a similar experience, sorry for the lengthy post but I found reading others stories helpful...

I am nearly 18 weeks now, we too had a cystic hygroma discovered at the 12 week scan. Measured 4.7mm and then 4.8mm when we had CVS 4 days later. They also said they could see skin oedema but no other fluid around any organs etc which is apparently a good sign. My antenatal bloods showed low HCG and pappA which when re-adjusted (they got my ethnicity wrong) weren't so bad but still low.

We were given a 1 in 28 chance of Edwards/pataus and 1 in 61 chance of downs syndrome. I was prepared for the worst. After 3 days found out the trisomies were negative and after an agonizing 3 weeks found that the array CGH was normal.

Then had a scan and appointment last week and the fluid had gone - although I find this reassuring apparently it doesn't mean anything with CH, nor does the amount of fluid (unlike raised NT) - I'm trying not to Google anymore. Having said this, they couldn't see anything obvious on the scan to cause concern. Need to wait for 20 weeks to rule out cardiac problems for sure, then 4 weekly scans to check everything growing as expected.

So, yes, it's terrifying I won't lie and we are not out of the woods but with each subsequent test result we feel a little more hopeful. Everyone has their own coping mechanisms but I'm trying my hardest not to stress too much as it won't change the outcome. This is easier said than done. I found reading stories on here both good and bad helped. I really hope you get reassuring results and I'll be thinking of you. I truly believe this is one of the hardest things to go through and the wait is dreadful x

@Usplusone thank you so much for your positive message. I truly hope that everything is okay for u and hubby and your baba xx I have just read your story to my hubby we do have a little hope now after having none. Still fearing the worst of course but we will know more this wednesday and I will let you know xx

I’m so sorry @Festivemovie, I know what you are going through and what an awful time it is. Wishing you and your baby the very best x

hey @Festivemovie - in a similar situation and still awaiting results. i hope things have gotten a little less brutal for you?

Hello @corkviadublin.. spent yesterday at the fetal assessment unit.. CH has increased to 7.3mm but skin edema has decreased a lot and doctor could only find a very small amount of fluid on baby chest area. All the edema previously on back had gone. I pushed her if this was good or bad but didnt get an answer. We had the cvs done and hospital couldnt believe that local hospital lost or mixed up all my previous bloods from nipt so no results and wouldnt do another they said because of the expense ! I'm not sure what to think atm I'm obviously now awaiting the cvs results and worried for the CH but felt positive about edema ? Doctor said dont get my Hope's up too much and take one test and one week at a time. Xx how are things going for you ?? Xxx

@Festivemoviewow - i cannot believe that about the blood work. wtf is that about.
The results from the CVS are usually very conclusive so i hope that brings u some clarity.
I had a scan at 11+4 and the baby NT measurement was 4.5mm. Doc said it was really serious and we needed a cvs. we had to wait a week to do the cvs - at the CVS the NT was 5.4 mm and i had lost all hope. The test was done on tuesday evening but i am in Ireland and we have to send our cvs to a lab in the UK because we dont have a lab in ireland. so i won't get results until friday or monday. i think it will be monday because it is a bank holiday here.

i am just so nervous because i want a good outcome, obviously, but if we get a bad diagnosis, we can't get a termination in Ireland in some circumstances and with covid etc i am dreading the trip if i have to make it.

if the baby will not survive the whole pregnancy then they can do a termination here. i am so sad to have to be talking about terminations - i just want a happy healthy baby - so many of my friends are pregnant it's hard

Oh the wait for results is just horrible. I find it hard to fully connect with this pregnancy, especially so when I was waiting for the genetic results. I think it's self preservation but makes me feel really sad when I think about it.

Just know you are not alone. I really hope you get your results soon xx

Thank you. I’ll post here when I get mine. Good or bad. Will you xxx

Uplusone and corkviadublin I am genuinely so sorry tha you both are going through this too in a similair situation to myself :(. My midwife was so nonchalant telling me the bloods where lost and we where devastated because we would at least have some more information by now. I will be praying for both of you and your beautiful babys today as well as my own xx will post when I here anything because my initial cvs should be here today or monday, let me know how you two are xx

I have no advice or experience of this but I wanted to wish you all well. I will keep everything crossed for some good news.

Thanks. I'll keep posting my news, good or bad. Having a pity party today, still got to wait a week and a half til the next scan x

Also, I'm so sorry your bloods were lost that's awful. I work in laboratory medicine, sometimes they do eventually turn up x

Uplusone I'm so sorry you are having a bad day.. virtual hug and best wishes.. what we are going through I genuinely wouldnt wish this on anyone in the whole world. I was hoping to hear re stage one of cvs test results today but didnt hear anything so assume it will be monday now. I'm trying my best to stay busy atm I'm binge watching Harry Potter as well to try and take my mind off things. I hope u are okay and feel a little peaceful at the weekend and get through xx

@Festivemovie binge watching Harry Potter sounds ideal! Thanks for the support, weekend was fine in the end. I've just never been good at being patient at the best of times. I hope tomorrow brings you good news I'll be thinking of you x

Uplusone I'm glad your weekend was okay x I've finished all the Harry Potter now and moved on to lord of the rings this is in between sleeping walking the dogs cooking and cleaning haha trying to stay busy and I just want closure now one way or another so I can find some peace again. I've had nine previous miscarriages and lost my mum last year and it's taken me such a long time to get my mental health back to a stable position. I feel like I'm teetering on the edge of becoming very unwell mentally again and I just feel so.sad I guess that I am back tos much a dark place after so much hard work to get back on an even keel. I hope this week is okay for you and I am hoping my results will definately come in tomorrow now as they said Friday or monday so surely should be tomorrow xx

Wanted to update got devastating news this morning that baby has downs syndrome trying to process it currently crying in the bath have a lot of strange emotions feel angry as well which isnt like me xx good luck to all and I hope your results are better xx

I'm really sorry to hear this. Take some time to try to process it, and work out what your want to do.

People with Downs Syndrome can live long and happy lives, but obviously it's not going to be quite what you envisaged and there will be more challenges.

Big hugs.

@Festivemovie we got the same results last week. We have spend the last several days discussing it and have decided that we just will not be able to parent a child with special needs - we already care for an uncle and severely disabled cousin.

It’s an agonising choice. I feel awful for both of us to be in this position.
I hope you come to a decision that can bring u some peace

I’m so sorry to hear this. Like thespottytortoise says, take time to process this. There can be challenges parenting a child with Downs but that can be true of all children and there can be so many wonderful moments too. Whatever you choose to do, I wish you all the best. Be kind to yourself

I received news like this earlier in the year. I'm in Ireland and the Down Syndrome Centre here were fantastic, I'm sure there are similar charities in the UK too. I'm a similar age to you and once we had processed the news, done some research, educated ourselves, the fear lifted and we started to look forward to what our little boy would bring us. It really doesn't seem scary anymore. Give yourself all the time and kindness you need!

[quote CorkViaDublin]@Festivemovie we got the same results last week. We have spend the last several days discussing it and have decided that we just will not be able to parent a child with special needs - we already care for an uncle and severely disabled cousin.

It’s an agonising choice. I feel awful for both of us to be in this position.
I hope you come to a decision that can bring u some peace[/quote]
Im so sorry to hear that. We have also taken the decision to terminate the pregnancy feel so heartbroken atm xx

How many weeks are you now @Festivemovie
It’s so tough. I think we have to travel to UK to do it

I am 16 weeks but I am going outside the nhs as I want a surgical termination and dont want to deliver the baby. I know it's not for everyone but I know that after all my previous miscarriages and losing my mum i havent got the mental capacity to hold a baby that has passed away . Have they said you have to travel over here ? Xx big hugs to you and sorry you are going through this too xx