Very High Nuchal Fold Measurement

[katiecubs]

Hi Girls,

I hope you are well. This is my first post here as I really need some advice.

I went for my 12 week scan on Tuesday and was delighted to see a lovely little baby on screen but then the room went quiet and the sonographer hit me with the news that the baby?s neck was very thick and almost definitely had some sort of chromosomal disorder. I was shocked to the core, I had worried about a MMC or something similar but I?m only 29 and never thought that something like that could happen to me (although I know it can happen to anyone).

The baby actually only measured 10 weeks 1 day at the scan so she told me to come back next weds and to see a consultant who would do the full NT test. I think she said that the fold was 5mm which I have since leant is very bad. I?m now driving myself mad with worry, I asked her twice and she said there was not much hope for my baby. Soon as she couldn?t do the full test though I?m not sure how she could be so sure? I thought it was only indicative and the only way to get a proper answer was to do an amnio or CSV.

Anyway sorry for the long rant I basically just wanted to know if anyone had been though this and had a similar experience to me? do you think there is any hope for my baby at all?

Thanks very much for listening.

Katie xx

Hi Everybody - i felt i should come back here and give you all an update after all your encouragement and kind words. Unfortunately it's not the one i hoped and prayed i would be able to give though. The NT had increased to 7mm and also spead all around the baby and it's organs - they were very concerned and i had the CVS there and then. They gave me odds of 1:100 for DS and 1:2 for Edwards (although she said this is the highest risk they could give and it would be more likely be 80 - 90% sure of a cromosomal abnormality). There also seemed to be a serious heart defect as the baby's heart was beating very fast and was obviously under huge pressure. I hate crying in front of people but i saw my babys fingers and little feet waviing around and it was so hard to take alongside this news.

I get the results on Friday but as you have heard even in the unlikely event they come back clear then there is not much hope for my baby.

The doctor though i may miscarry in the next week or so anyway and in my heart i am sort of hoping for this so neither of us have to go through much more pain and suffering.

Again thanks for all your support it really has been incredibly helpful and touching.I hope to rejoin you all one day with better news. Love Katie xx

Very sorry to hear you had such bad news from the scan today Katie.

So sorry for your very sad news. Life's shit sometimes.

Oh Katiecubs - I am so sorry to hear your news... Sometimes things just don't work out but that doesn't mean that next time they won't. When you have healed (both physically and mentally) and feel ready you can try again.

So sorry you're having to go through this.

Katie, Im so, terribly sorry to hear your news.

Hi Katiecubs i just stumbled across this thread and am so very sorry for your news. What an awful time for both of you.
I have a friend who had a similar tale to this for our last pgs. Whilst that pg did not succeed, her next one was happy, healthy and her little girl is now only a couple of months younger than my DD and they are great friends. I hope we get to see you back here soon with a happier tale and we will all be thinking of you over the next week

Katie, I've not posted before but I couldn't read and run. I'm so sorry to hear your update. I was looking out for it and hoped it would be better news for you. I really hope the next few weeks and months work out as well as they possibly can for you and I hope we'll see you on here one day again xx

Katie, I'm so sorry.

katie

i cant imagine what you are going through but i know mumsnet is a great comfort when things in the "real world" are so hurtful..

i am not religious but when i had my mc i tried to feel privilaged for the time i got to carry the baby and i feel now as though we have an angel looking over us.

I hope you can make it through and that we see you back here..

xxx

Katiecubs - I'm so sorry to read this. It's devastatig news. I'll continue to hope for a miracle, and hope that you have lovely people around you to help you through this.

So sad

db
xx

Katiecubs, Im so sorry to hear your news, my thoughts and prayers are with you . Dont worry about crying infront of people, its devastating news and I hope you have support around you to help you through.

Katie, just wanted to say am thinking of you.
xx

Hi Everybody, Thanks for all your kind words!

I got the results yesterday and i am carrying a little girl with Turners Syndrome - where only one X cromosome is copied over meaning the child will probably be small and infertile. There are sometimes other problems too but often the can lead perfectly normal lifes and intelligence is not usually affected. It's actually a very common occurance affecting about 3% of all female conceprions, it's just 99% miscarry early on. This is what they think will happen to me, because of the hydrops and heart problems they have said there is no chance the baby will survive being born so i am opting for a termination beacause of that, i think it will be in about a week but i may miscarry naturally before then anyway which i'm sort of hoping for and i know i will feel less guilty that way (even though i know a termination is the right thing to do for all of us - the longer it goes on the more it hurts).

Anyway girls i'm sorry to bring depressing news i hope you understand my need to vent. I have found that people often only come back to update when the have better news which sort of led me into a false sense of security. I hope if other people in similar situations come across this thread it may help them feel less alone.

Obviously me and my partner are extremely heartbroken - it's just so sad. I do know that i am lucky in many ways though, we have found out early on and we are young and healthy and have many chances ahead of us to have another baby.

Thakyou so much again for your support and i hope to be back again in the future so maybe we will 'meet' again :-)

Katie xxxxx

Katie I'm so sorry to read your update. Wishing you all the strength you need and if you feel ready there is a support thread in the antenatal choices section for women who have been through or are going through the same thing. Take care.

Sorry to hear the news Katie - wishing you and your DH lots of strength for the path ahead of you.

Katie, you poor poor love, what a lot you are going through. It's the most hellish time isn't it. I have only just read your thread but I couldn't not write back.
I have had two terminations, for chromosomal abnormalities (different ones, we were just struck by lightning twice). The first one was with my first baby, - so much longed for and wanted. This was back in 2004, at 22 weeks (problems not picked up til the 20 week scan). Then I went on to have a baby girl - almost 3 now and lovely! This year my world was rocked to the core again when our 12 weeks scan showed problems, after extensive scans, waits, and a cvs, I ended up terminating at 17 weeks.
So I really feel for what you are going through now.
I know many ladies who have had similar experiences and sometimes if your body miscarries on it's own accord it can be 'easier' that making that heartbreaking decision to say goodbye. The choice is taken out of your hands.
But if you do end up terminating, there are things that can make a difference between it being a bad experience and a peaceful one. Even if your head tells you that a termination is the 'right' thing to do, it is still such a difficult time and you will need support.
Did you ever contact ARC? They really are brilliant, I cannot sing their praises enough.
If you need to, or want to, there is a thread on the antenatal choices section that will hold your hand throughout: here
I post there, and would be more than happy to tell you things that made my second termination a special time to say goodbye.
I don't know whether you have been recommended to have a surgical procedure, or to give birth?
I'm thinking of you and sending big hugs your way.
Lins xxxx

Oh Katie I am so, so sorry you and your dp are having to go through this

I too had a baby girl with Turner Syndrome, unfortunately we didn't find out until our 20wk scan but pretty much the same situation as yourselves.

It is the hardest thing you are ever going to do or have to deal with and I so wish you didn't have to. But please believe me that one day you will be happy again and you can still go on to have a healthy baby.

Be kind to yourself and let others around you look after you, take as long as you need to deal with this and don't let anyone make you feel as though you just have to "get on with it/get over it" You need to take as much time as you need to grieve for your baby girl and all she meant to you.

My thoughts and prayers are with you all, I just wish there was more I could say.

x x x x

Oh Katie, I am so sad to hear your news. I know how awful it is to decide what to do - we had a baby diagnosed with patau's syndrome (t13) earlier this year, with major problems showing on the scan. It is the most difficult decision I have ever made, I think, the decision to end the pregnancy; and it's harder still because sometimes other people don't understand how painful it is emotionally for you to do it.

As Linspins said, there are things you can do which can make ending your pregnancy a way to say goodbye. And you can also spend the time between now and then just being with your baby, sending her your love - you are doing this because you want to release her from the path she's on, not because you want to lose her. In the end I found out that my DD had died before I ended the pregnancy - I had the date booked, but wanted a scan beforehand and she had slipped away. If she had been there I know it would have been painful, but I wanted the chance to say goodbye to her.

I would also second Linspins advice about getting support from ARC or from this thread. The women there have either been through or come close to ending a pregnancy for various reasons, and it also includes continuing life and emotions as people move on. Everyone there is very understanding and kind.

Sending you gentle thoughts in this sad and difficult time.

Katie, so sorry to hear this too. I also had a baby girl with Turner's Syndrome but she had already died by my 12 week scan so wasn't faced with making that heart-breaking decision. I was still devastated though so understand some of what you must be feeling and my heart goes out to you. I totally agree with EasyEggs who says to be kind to yourself and allow yourself the time you need to grieve (there were many people who couldn't understand why I was so upset - after all, I already had two DSs!).

Will be thinking of you in the coming weeks. Hugs.

Hi Katie, just wondered how you are doing? Thinking of you and hoping you have plenty of support and hugs. xxx

sorry you are going through such a heartbreaking time katie, thoughts with you and your family.

katie, i am so very sad to hear your news.

Thank you, thank you, thank you everybody for taking the time out to reply!

A special thanks to linspins, numpty mum, easy eggs and long time in brussels for sharing your experiences, it has really helped me feel less alone. I don't know anyone else who has been through this, i guess it's not often something people like to talk about. I am so sorry for all your losses and i hope you are coping well.

I'm not sure how i am doing right now - sometimes i feel ok other times i feel awful and can't see much light at the end of the tunnel. I had a few of my oldest friends visiting this weekend and i was going to tell them my happy news, instead i've just said nothing as i knew i would just break down if i talked about it. I was so looking forward to being a mum but as i've mentioned i am very lucky that i am still young and have lots of time left ahead of me.

Lins thanks for mentioing ARC i will have a look through their site. I am currently waiting for a termination date, i think it will be next week which will mean another whole week of being pregant, if my little girl lasts that long :-( I will be having a surgical termination as it will be before 14 weeks. I think that will be best for me as i don't think i could cope with being awake.

Anyway thank you so much for thinking of me - i have a super partner who is looking after me amazingly well so no need to worry. My mum and sister also know and have been great so i am far from alone - especially considering the support i have from you guys who really understand what i am going through :-) it really really helps!

Katie xxxxxxxxxxx

Katie I can't really add to the great advice you have had here but I wanted to let you know a friend of mine was in a very similar situation a few years ago. NT was 7mm on the 2 wk scan, various problems with heart etc, drs were very suprised she hadn't already miscarried and were certain the baby would not survive - so her options were to terminate or to wait for a miscarriage/stillbirth. Turners Syndrome was diagnosed in her case too.

She chose to terminate and a few weeks later she and her dh had a kind of "goodbye" for their little girl, the two of them climbed a hill nearby to where they lived, named their girl, talked about her and released a helium balloon in memory of her.

A couple of years later she had her second dd and is currently expecting her 3rd dc.

So sorry you are going through this and I wish you lots of strength for the weeks ahead

Thankyou whatshesaid - it's good to hear that people go on to have children after going through what i have. I know they say it should not affect your chances later on but you can't help but worry! I hope your friend is doing ok x