Higher reading for Nuchal translucency scan - feeling panicked!

[linspins]

Hi all, Just been for our 12 week scan today and had the nuchal scan to test for Downs. The reading was 2.8mm. They said this was high, but not high enough to be classed as high risk without doing a blood test. I had a blood test afterwards, but the results won't be in til Friday. I am just really worried now that there is something wrong with the baby. I'm 36, so no spring chicken, and had a heartbreaking time with my first pg, after severe abnormalities were diagnosed at the 20 wk scan and we had a termination. I have since had a healthy lovely little girl, but I'm scared again. Has anyone else had high nuchal reading, was it ok?

Hi all,
It's now a week and a day since I gave birth to Dasiy. She was born at 2.10pm weighing 150grams. Very weeny, but still so beautiful.
After the (really horrid) pessary things and one oral tablet, my contractions were very strong, but the nurse thought I'd need another one in 3 hours. I said "I hope not, this really hurts...", and no sooner had she left the room, I felt a tiny pop inside, and a sharp pain and contraction, and Daisy was born. I barely had time to grab the gas and air. The nurse came flying back, and sorted
out the rest. I like to think Dasiy was listening to me saying I didn't want to go through 3 more hours and thought "ok, Mummy, i'll come out now."
The placenta was delivered about 45 mins later, after a doctor had had a good old feel inside - urghhh! I had been very worried about having to go in to theatre but they thought it had all come out.

My husband and I spent time with Dasiy, I talked to her and held her and gave her a kiss. We took loads of photos, although my husband found this part very
difficult. I think I was on a hormonal high, with lots of adrenalin pumping through me, but he really struggled.

The worst bit was letting go...I was in tears, saying "I don't know how to do this bit...I know how to carry a baby, and give birth to her, but what mother lets her baby go?"
My husband knew I needed help here so he kept reassuring me that Amy (our first angel baby) was waiting to give Daisy her milk, and that I had to let her go now
etc. I knew that if I didn't say goodbye, I would want to spend forever in that room, holding her.

We didn't want to go home that day, and the staff were very supportive of this. We had a room with 2 beds in, and my husband stayed the night with me. Whenever I was brought food, they brought some for him too, which was a small gesture that made a big difference.

I had panicked about clothes for Dasiy some days before, then discovered a local charity called Little Love, who sew/quilt/knit clothes and wraps and weeny blankets especially for this type of situation. I emailed a lovely lady who arranged for me to see what the local hospital had. I ended up buying some material especially, with dasies on, and she made me 2 tiny wraps, and a matching blanket. She used a weight estimate from our scans to get the size just right. We bought 2 little rabbits too. So Daisy kept one wrap, her blanket and one rabbit, and we kept the other wrap and rabbit. The night before she was born, we slept with the things close to our hearts...
What a surreal time though, to be sitting in a strangers's kitchen, while they sew things for you. I sat there, swapping stories with her (she also lost a baby
early) rubbing my tummy, knowing that the next day, the baby who was merrily moving inside me would be wrapped up in these blankets, dead.

We came home on Monday, and since then I've felt like I'm living in a bubble. It's been weird and quite disconcerting. I barely cried last week at all, which
is so different to the immediate and raw grief I had after Amy was born. Apart from the odd strange feeling, I actually had a lovely week with my husband and
toddler. We were out in the sunshine a lot and I just felt nothing. What's going on? I still feel a bit like nothing has happened, and although I cried writing the bit above, I wonder if I am blocking this out cos it's all too much?
I do feel like we got it 'right' this time...with the clothes, the holding, the photos, the proper goodbye, but now why am I not sobbing all the time? Where is
all the sadness? Is it waiting to spring out at me?
Physically, I feel inappropriately well. My morning sickness (which had made my life hell all year) went like a switch had been flicked. Apart from an ache in
my lower tummy and some bleeding, I feel ok.

I went in to work today just to say hello, and that went ok, but I still feel unconnected to the real world. Obviously, having a 2 year old toddler makes us
get up and carry on, and she is a light in my world, but I don't want to bury my feelings too deep.

It was also the 5th anniversary of my angel Amy this last Saturday (she was born on Mother's day) and we went to the crematorium to take flowers and let some balloons go. I feel a bit guilty that I haven't been thinking of her recently in the same way I would normally at this time of year. I just haven't been thinking at all.

I don't really want to face normal life now. How can it all go on as usual? I just feel empty.

Sending my very best wishes to all of you who sent me messages and support. It's really made a big difference to know you are all out there.

Love Lindsey

Hello Lindsey, what a sad ending for you all, and you did some lovely things for Daisy that made me smile and cry at the same time.

I hope you don't mind me coming back to your thread but couldn't leave your last post without saying hello and wishing you well. I would suspect you are still in a kind of shock and that will be leaving you numb. Of course on the surface life will continue as normal, (you have your beautiful daughter to see you through) but don't be surprised when your grief hits you when you least expect it.

I cannot even begin to imagine the pain you are going through right now, but you are in my thoughts.

Caroline.x

Dear Caroline, thanks so much for your message. I'm taking it one day at a time...we're hoping to have a little service and cremation in the next few weeks.
I especially wish you well with your little boy, and hope his life goes as happily as possible. I can't quite find the words to say what I really want to say, from one Mummy to another. But thanks for your support on this thread.
Lins xx

Linspins,
I posted earlier in this thread and have just read your update. I am so so sorry that you have lost your little girl and for what you have had to go through the past few weeks. I cannot even begin to imagine what you must be going through right now, but my thoughts and prayers are with you and your family.
God bless you and Daisy.

Lins - I have been checking periodically on this thread to see how you are doing. I am so glad that you have posted to let us know how your Daisy came into this world. I am glad you were able to plan ahead for her arrival and that you got to spend some time with your little angel. I am just very sorry that the circumstances are so sad. I agree that things probably haven't quite settled in your mind, and that sometime in the future, perhaps something will 'click' and you will have a good cry and begin to feel better. When that time comes, feel free to cry on our shoulders, rant, etc. We are here. I hope that your toddler will help bring some light into your life right now and give you some glimmer of hope of what the future may bring for you. You and your family are in my prayers.

Dear linspins

I am new to mumsnet but had to sign up after reading your story. I am so, so sorry for your losses and am thinking of you all. To decide to terminate is the hardest decision any parent can make and I just want to say my heart goes out to you and your husband. I can't begin to imagine the devastation you must have felt when the results came through.

I have had a glimpse of what it might be like thinking about that decision in the last 2 days - we had a high nuchal reading on tues but blood tests came back normal yesterday. They want to do thorough checks at 20 weeks but for now we're not having the amnio or cvs. I know we're not in the clear but the last 2 days have been agonising, thinking about how we would decide whether or not to terminate depending on further results. I have a happy and healthy 3 year old who got us both through the last 2 days. 2 days I know is nothing compared to how long others have to wait, but it seemed an eternity.

I hope you all have lots of support around you to get you through this difficult time. The grieving process is so individual - let it be what it is and give yourselves the time to heal. No one will ever forget your beautiful daughters.

With lots of love and thoughts
x

Hi the buzz, that's a lovely message. I was new to Mumsnet before all this and the support I've found here has been amazing. It must be a hard thread for people to read all the way through...
I really hope things go well for you. It's good that the bloods came back fine - pregnancy is such a roller coaster isn't it. The thing with the whole 'decision' thing is that it's so hard to guess what you might do until it happens. I have friends who have said in the past 'Oh, I'd never have a CVS or amnio because we wouldn't act on the results.' But I am willing to bet they might feel differently if presented with problems in a pregnancy or at a scan. You just can't tell. I think it makes a difference if you already have a child too, cos you have to take them in to account too and what their life would be like.

The grieving process doesn't even feel like it has begun this time. After we lost our first baby, I was immediately bereft and could hardly get out of bed for crying. Right now I just feel a bit empty and flat, but have not had the whole 'howling at the moon' full-on crying yet.
We were told today that Daisy's body is back from the post mortem so I expect we'll hear soon about a date for her service. Life feels so surreal, because at the same time I am thinking 'I wish time would hurry up so we can start trying again.' But it's going to be terrifying.

Anyway I hadn't intended to write that much!! Basically - good luck and thatnk you again, and hope the statistics are all in your favour! Keep us posted.
Lins xx

Hi Lins - good to hear from you. I wish there was a way of sending a big hug to you. Even though you've been through it before doesn't mean you should be able to cope with it or understand it or even know what comes next. Judging from everyone else's postings there are so many people out there thinking of you all.

I completely agree with you about having to make such a decision - what became apparent to me when we thought we were heading towards bad news, was that we were about to be in a situation that whatever choice we made we would have to live with for the rest of our lives. And I truly think it is the most devastating situation for any parent, especially a mum, to have to be in. Not only the total and utter sadness involved in not proceeding, but the responsibility that I think I would feel for choosing for my child to suffer if I did proceed. And it is not to judge anyone on their choice as everyone's situation is different. Like you say, you have to think about other siblings too. Although you would no doubt give your world to not have been in that position once let alone twice, I truly admire your courage and bravery. And for anyone who very confidently says oh I would never terminate or I would never have the tests - like you say they can't say that unless they are in the situation, faced with their own family and own set of results. Only then can they truly understand.

Sorry to waffle on - I have been thinking about it a lot recently and having signed on to Mumsnet I see what so many other people have to go through.

My 20 wk scan is on the 11th May so some time to wait. Please keep us updated - we're all thinking of you.

Steph x

Dear Linpins
I have been reading your thread - as have one myself at moment - pregnant again after termination for Downs. I found out last night that this baby too has Downs syndrome and a heart defect. I totally understand your slightly frozen and oh so different to last time response. I can not believe that i am writing to you now when should be wracked with sobs. I think it may be partly shock and partly that in my mind's eye I suspected that more bad news was coming or at least could not fully immerse myself in 'being pregnant' as the innocence and joy has been ripped out. I feel for you. Is truly so shocking and unbelievable. My reaction is so different. One minute heart wrenching sobbing. Then a coldness - a state of non- feeling. You have been courageous and dignified and loving towards both your child and your angels. Also there is nothing you can do about it and it is not your fault. Your threads are full of love for you two angel babies and that is a huge thing. Do you think in your heart of hearts maybe- like me - you know you did the right thing? As agonising as it is? I also have anger, rage and cynicism this time which I did not last
Last time I had hope. I just wanted to get pregnant as soon as possible and that is what i did. Not so this time. As maybe it is genetic.
I wish you strength and love and that you are able to get pregnant and that you will have a fourth but very present wee baby to love. Keep in touch if you can. I have taken such comfort from mumsnet - can not bring myself to speak to anyone in the real world at all.
Reaching out to you across cyberspace BB

Oh Busierbee, I can't believe your sad news. Its so terrifying to be pregnant after loss, but to find out your poor bubba has problems too...I'm just at a loss for words. I SO don't want anyone else to go through the same as me! How many weeks are you? Did you have any genetic screening after your last angel? The whole situation is such a nightmare, I wish I could give you a real hug. I do, logically, know I did the right thing, but it just never feels right in a mother's heart to actually decide to let a baby go.
I'm still waiting for my world to come crashing down, but then again, maybe it'll be a different type of grief this time.
Just can't think what to say to comfort you (I ought to know- people have written so much to me!!) . Please write back if you want. One thing all this has taught me is the comfort and support that can be gained from others in the same position.
(p.s Do you know about ARC? )
Love Lins xxxxx

Dear Lins,

I'm so sorry for your loss.
Daisy is such lovely name for your little girl. I hope you continue to get the support that you need during these tough times.
Don't beat your self up about how you are feeling - it's still early days. The fact that you were in some way prepared for what would happen, and had time to do some special things for Daisy, and had time to spend with her after her birth helps to make it a little bit easier.
I don't really know what else to say, other than I wish you much happiness in the future - you certainly deserve it.

xx

Hello Lins and thank you so for your sensitive and thoughtful words - you are of course right - words are not a comfort in themselves but somehow knowing that someone else really knows this pain is a help. Stops the unbearable loneliness. I am 12 and a half weeks and i feel very pregnant still. I can not think about the termination. As you say it is an unnatural, devastating thing to do - feel no one should have to be here. Yet here I am. Again. I did contact arc. But actually last time i find it very traumatic reading all those heartbreaking stories of loss and pain. I read in two of the newsletters of two couples who had two downs pregnancies and it scared me. As all the doctors were reassuring us that of course we must go for it. What are the chances? So we had no genetic testing - we will now. I am however 42 so the chances of another baby with downs will be so high. My lovely partner is not a father - I have three wonderful children from my first marriage - and I am truly heartbroken for him. Today I feel very low - like the joy in my life will never return. But the sun will shine again. How can one feel okay knowing what is in the week ahead? To make things worse- my hospital which as been great so far - do not do terminations and refer you to Marie Stopes. Do not think this is going to feel safe and okay. So the dark tunnel must be got through. The baby is too tiny to be born - it will be a surgical termination not a delivery. It is all a nightmare. Thank you so much for reaching out in the middle of what must be a raw and painful time. Grief changes and surprises I think. Your words are a comfort - you have come across as an intelligent and loving mummy. I do not know what to do with myself today. xxx

Dear Busierbee, I wish you lived next door so that you could come round, smell the spring daffodils, have a cup of tea, and talk as much as you liked about the truly horrible time you are having. I know that feeling of "WHAT?? AGAIN??" and feeling that someone up there really doesn't like you.
I'm surprised the baby is too tiny to be born, but I guess the docs know best. Would you give birth if you could? Its a bit harsh having going to Marie Stopes which is so associated with abortions for those who choose them. Could you go to another hospital?
You ask how you can feel ok knowing what lies in the week ahead...well, I reckon sometimes a brain just shuts off feelings to protect you from being so overwhelmed by them.
The ARC message board is less scary - tales of pregnancy after loss too and messages of support for this. I don't know if I am right here, (I'm sure you know more) but I thought that the majority of Downs wasn't hereditary? But genetic testing is obviously the way forward. And then if it was hereditary, aren't there ways of helping to conceive a healthy baby, like PGD? Sorry if this isn't appropriate comments.
It is so awfully sad for your partner too, I hope you have the strength to support each other, and get lots of hugs. Is he coping ok? (silly question, but you know what I mean.)
Keep in touch here, we're all thinking of you.
Love Lins xx

Hello again my dear
Well yes he is coping - but crushed. Re genetic component for downs - there is in fact a one percent chance and given that we have had two.. Golly what is PGC.. i am getting excited already. Thank you for telling me about the arc website too - I have certainly found comfort here - in fact I am kind of addicted - first thing I do when I wake up or come in. Have just had a morning of crying and then taken out for brunch - am distractable i guess. Re the dreaded termination - yes we are going to try Hammersmith Hospital -- where we were last time - although the secretary has been very frosty which makes me upset. You are right i can not face Marie Stopes - but to go privately is expensive and of course we can find the money - it is more I wanted continuity of care with my current hospital - UCH. No one has mentioned having a birth. Not sure why - think they feel a termination is easier? I do not know. Not sure at moment that I can bear to think about it. Your image of daffodils and tea and words is a very seductive one to me right now. the pity from those I know is somehow not bearable whereas someone who has been there ....
Enjoy your daffodils if you can. Will have a cup of tea and a cupcake, light a fire and watch a film with my sixteen year old girl.
thank you again Lins - i so appreciate your ability to share your feelings at this time.
BB

Hi Busierbee,
It's a funny thing the whole medical procedure versus birth...some mums are quite shocked to find out they will need to give birth when terminating at say, 18 weeks, and I know different hospital have different cut off points for when they recommend one way or the other. I gave birth the first time to Amy at 22 weeks, at was terrified at the thought, as it was my first labour and I didn't know a thing about it. But afterwards I felt it made more sense this way: it followed the natural pattern of 'get pregnant, carry the baby, give birth'. And so with Daisy I would not have had it any other way. But for some it is easier to just wake up when its all over, and obviously how many weeks pregnant makes a difference too. I'm sure if you felt strongly that you wanted to do it a particular way, you could.
PGD - it's Pre-implantation Genetic Diagnosis, (...or PGT , testing). Basically they get an egg, sperm, create an embryo, and then screen a few cells from it for Downs - or whatever they need to look at. Then you get IVF with a healthy embryo. It's used for helping parents who are carriers of certain chromosomal abnormalities. I thought at one point that either myself or my husband might be carrying a deletion on chromosome 22, and that PGD could help us, - but it turns out we're not, and our two angels had rare but unconnected chromosomal problems.
I don't know if PGD could help in your case, as there may be age restrictions and there's also fact that you have 3 children already. But maybe privately this would be available (I've heard the team at Guy's hospital are one of the best.)
Just so that your partner knows, there is a men's ARC message board too. It's not all that active as blokes don't tend to spill their hearts to strangers so much, but when someone does post, they do get replies. My husband looked on it recently and wrote a quick message to another guy who had just lost his second baby to the same genetic problem. We're all in the same boat.
Anyway, I hope you enjoyed your tea and film. And you mentioned pity from those you know is hard - just so you know, I'm sending you empathy, sympathy, and a great big hug. xx
Lins.

Thank you Lins for all this information, generosity and kind heartedness. I have just emailed arc re their talk board. I find it easier than talking at the mo. I think we will be genetically tested but, like yourselves, it is more likely the randomness of life. Also of course assisted conception should be for couples who have had long traumatic histories of non conception - I do feel that. We are both aware that part of this tragedy is that we met later in life and therefore everything more tricky. We will just seek information - as it gives us something to focus on and gives a glimmer of that necessary quality in life... hope.
Your description of birth sounds fitting to me - may I ask when you may be having your service for Daisy - I would like to think of you and your hubbie at this time. I am in a bubble of shock, denial, fear, sadness with also deep closeness to him- my partner- and sometimes crazy laughter somehow. There is something about feeling his pain, feeling his loss and sadness that makes me realise how very much I love him and need him. If there is nothing else that comes out of this traumatic experience, I do feel that the love and connectedness and ability to feel another's pain is valuable to us. so I accept your compassion, sympathy and empathy and the hug is very much mutual.For you two too are in the midst of huge loss and sadness I know. This is life.
Thank you so much for your honesty. I am forgetting as i write to you that everyone else can read this - how odd.
BB

Hi all...
I embark on this week knowing that the phone will ring someday soon with a date for Dasiy's funeral. Possibly it will even this week. This is a big and 'final' step. (Although far from final in the whole process of grieving and living...) I know how important it is to say goodbye properly but am finding it hard to address the whole thing. Feeling very low, and just so empty.
AND I'm grumpy because I picked up something too heavy today and now my back aches!!! I really suffer from back problems and just don't need this right now.
Hey ho.
Right off to do battlebath and bed with toddler.
xxx

Hello again dear Lins
Just read this too from you - I hope you get your date this week and that your goodbye to Daisy is how you wish it to be. Will be terribly hard for you and you hubbie both. You really do need looking after too... but also looking after a toddler must be a way of immersing yourself in love and loveliness. Do not tire yourself out though - is early days. The empty and low thing - do you think Sundays are somehow worse? Golly one day at a time. Rest and be ready for the week ahead. Thinking of you in your daffodilly garden.With love BB xxx

Hi Everyone...
We've got a date for Daisy's cremation service, it'll probably be the 15th April at 9.30 a.m.
That will be exactly a month after her birth. It's quite a time to wait from now and I'm not sure whether it would be better to 'get it over with' but I quite like the same date thing.
I spent quite a while this morning looking at songs on You Tube for her service. I was a blubbing mess, hot tears just running uncontrolled down my face. Try listening to "Baby Mine" from Dumbo, sung to him by his mummy, without crying - I challenge you. I had a few recommendations for songs/music but if anyone here knows a good one, let me know.

Today I've felt really emotional. Maybe because my toddler was at nursery but I was not at work, so I had time to just 'be'.

I've been wondering how everyone else is getting on? There have been quite a few Mummies on this thread having tests, waiting for results and generally riding the roller coaster of being pregnant. How are you all?
Love Lins xx

If you are feeling wobbly Lins maybe do not read the latest post on my thread from another person who thinks I have not maybe taken the time and emotional effort to consider keeping my baby. Am feeling angry. I wonder if people truly listen. I did not want to to turn into a debate of the lives of special needs children and adults. It seems to be be turning into that. So may sign off now - as it is too too hard as it is. Unsolicited advice never that helpful when I have already said that i have made my decision. Oh dear. I would like to still be able to reach out to those who understand so may contact you through this thread if that is okay. Understand if not. Space to feel not necessarily a bad thing for you today even if so painful - golly who could easily choose a song for such an occasion - nobody could. You are as ever brave and honest and lots of people on this thread recognise that.BB x

Too late BB, I read your thread. I said to my husband last night (in a huff over what someone wrote to you) that this isn't the right place for debate when someone just need support. But don't go away completely, you've had so much help and so have I from lovely kind mummies here.
xx

Having another low day. I would have been 19 weeks today, with a lovely neat bump. I want my baby back. I am crying all over the keyboard.

How did it all go?

Ignore last post, didn't realise the thread continued. I only read up to the end of page one. Sorry to interupt, will carry on reading!

Oh linspins
The crying comes in such overwhelming waves - you poor poor girl .You have had such a time of it. Let the tears flow and let it pass. I have been at the hospital all morning. Will tell you more later if you feel up to it. There is nothing to say to make it better - just to be got through. am thinking of you so.
BB x