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?

Slightlycrumpled, I don't know whether you'll know the answer to this one, but, as a general rule, if a baby has serious problems with their heart, or brain etc because of DiGeorge, does it follow that the rest of the spectrum of stuff will be serious too? (Does that make sense..?)
And also, here is the question I shouldn't ask and I know what you'll answer because you have your little boy with you and you LOVE him so....but: if you had known he had DiGeorge, with a severe heart defect, and didn't know how badly he would have been affected by everything else..what would you have done? I know, impossible to answer.

There seem to be lots of 'miracle child' stories on the web, but not the ones that don't end so well. All these tests and diagnoses give one the chance to play god with a life, but neither do I don't want to inflict a tiny life with pain and suffering and for them to not make it.

Lins, I hope that today brings some more answers for you and that you are as okay as you can be.

I don't really know is the easy answer to your first question. My little boy is moderately deaf and had a type of cleft palate. He wears hearing aids and has a severe speech problem which he had a big operation last year to help. One child in particular that I have met does/did have the serious heart defect but had no hearing difficulties and his speech was okay. I think it follows that the immune system will be poor particularly in the early years of life. However, this can and should be properly managed.

Right now the tricky one.... do you know I discussed this last night with DH, to put ourselves back six years to when we had the twelve week scan /bloods etc. We both said it was impossible to say. The problem is when you have a diagnosis you google, you research and it is all consuming but you are not living with the child yet. So it doesn't mention the personality only that baby will have etc. When we got our diagnosis at 4 we were devastated and very frightened for the future for him, us as a couple and of course our older child. It was only when we realised that he was the same child he always had been that we viewed it differently. I'm sorry this makes no sense but what I am trying to say is that in your situation without knowing first hand what it entailed I think hand on heart we would not have continued with the pregnancy. BUT should we be lucky enough to have another baby syndromes such as Downs and di georges will not frighten me in the same way and our decision would be to continue.

He signs to overcome his speech difficulty (which is improving), he has had numerous operations over the years and I would be lying if I said he had not had more than his fair share of suffering. But he loves life, he enjoys every day of his schooling, he is adored by us, grandparents, wider family and friends. He is currently playing on his bike with a friend in the garden. Life in his view is great.

The other problem is that whatever I say I haven't lived through it in the same way as you and the decisions you have to make are, as you say, impossible. I feel so much for you and to say that your thread has touched me is an understatement. I do hope you are okay.
x

Apologies if this has been mentioned, but India Knight's dd has DiGeorge syndrome and she's written about her quite a bit in the Sunday Times. She has a blog here

My NT reading was 7.3mm, yes, you are reading well, 7.3mm!!!!!!! We had all the tests done and baby is fine. I am due in 6 weeks. I had the biggest shock of my life and I still get so sad and upset when I remember what I went through.I feel so lucky and fortunate I was one of the lucky ones after having a 1:5

Can't help at all practically and can't imagine what you're going through, but just wanted to send hugs to you, Linspins.

x

Lins- how did your latest appointment go?? Lots of huggs.

sad news
I'm afraid this thread has a sad ending, in fact it's a heart breaking, agonizing, souls searching choice...but we have decided not to continue the pregnancy. It has taken a lot of scans, tests, waiting, talking to lots of (very experienced) health professionals and ultimately the 'big' conversation with husband where we agreed what to do.
I know that some people don't agree with this type of decision, but to me it is the biggest sacrifice a Mummy can make.
We will probably go in to hospital on Sunday to give birth.

I am so sad I can't really begin to describe it, and I hope none of you every have to feel this.

Slightlycrumpled...I'm sorry.

Wishing everyone else on this roller coaster of pregnancy: stress free times, swift painless labours and happy healthy babies.

I am so grateful for all the support I have found here. I was new to Mumsnet and was so glad to have you 'all around me'.

Thanks everyone.
Lins xxx

Lins, My prayers are with you and your family. Am so sorry for your loss and realise how utterly devastated you are...

Linspins, Please don't be sorry, you are going through a terrible time and are making a heart breaking decision and are clearly devastated. I don't think words can describe the pain of losing a much wanted and loved baby, and your baby is loved.

I will be thinking of you and your husband on Sunday and in particular the coming days.

I hope I haven't made it any worse by my postings and I admire your bravery.

Caroline.x

Lins - so sorry for your loss. We are here to support you, not judge you. The decision you have had to make is one no mother should have to face. I applaud your bravery and your strength. Just shows you how much you actually do love your baby, not to want her to spend a lifetime suffering. May God bless her and keep her safe in heaven with your other lil angel. You will be in my prayers on Sunday and in the difficult coming days.

Im am so very very sorry to read this.
You and your DH have been incredibly brave. You have done what you believe is best for your baby and no one can ever do anymore than that.
x

Lins. Am so very sorry to read this, I can't imagine how difficult a decision this must have been for you - it's so clear how much your daughter is wanted.

As others have said, we are here to support you without judgement. Will be thinking of you at the weekend.

xxx

Linspins, I'm so sorry that things have ended the way they have. I'll be thinking of you on Sunday. I hope you and your family get the help and support that you'll need over the coming weeks.
Much love to you and your little one xxx

What a surreal day. I took a tablet yesterday to begin the whole process and today is just waiting. It has been all so normal...having breakfast, playing with my toddler etc...but at the same time there is this awful thing hanging over us. I want tomorrow to be over, but I don't want tomorrow to come. I wish I could keep my baby safe inside me forever.
Have been putting off packing my bag but need to do it sometime. This is a nightmare situation and every minute that goes past is another minute closer to what i wish didn't have to happen.

linspins,i have been following your thread since the start but havent posted. i just want to wish you strength tomorrow and for the days ahead; I will be thinking of you all. your strength so far has been amazing and your courage is to be admired.
good luck and take care.

Linspins I have posted briefly before and been following your thread. DP and I made the same decision almost a year ago and am just so sorry that you are going through this.
Thinking of you, sending strength through the screen to you and your family. Take care. toomuchpicknmix

Hello Linspins I have also been folowing your thread, and I just want to say how sorry I am. Please look after yourself I hope you have people around to support you. What an awful decison you were faced with, you are being incredibly brave. I too wish you strength.

Hello Linspins,

I also have been following your thread. I was in a similar position in 2007. I am so very sorry that you find yourselves a second time having to make such a compassionate and brave decision.

I wish you strength and send you kind and gentle thoughts. I hope all around you can give you the support you need. xx

Linspins, what a devastating time for you. If you haven't already done so, please have a look on the sands website where you will find help and support and other people who have been in your situation. We lost our baby at the end of Jan and I know how difficult the process can be with a toddler in tow, please make sure you have plenty of help with your DC.

FWIW (we had a week of probs before actual birth and obviously underlying concern since 12 week scan) I really think I did feel better once the baby had been born, and now feel a lot better since the funeral. I know you have been through this process before but it really helped us to get baby's hand and footprints from the hospital, and I know some people like to hold their baby etc. Thinking of you and your family, hoping the birth is as gentle as possible on you.

Linspins, you've been in my thoughts today, I hope today has gone as well as it could do, look after yourself xxx

Lins,

Hope you are as well as can be. I hope things went smoothly for you yesterday and that now you can start the healing process. wishing you much strength through this hard time... I am sooo sorry for your loss.

I am crying as I read this thread. I am twelve weeks pregnant with twins and had my nuchal translucency screening today. One twin is seemingly fine, the other has a fluid reading of 5.68. I am devestated. I have two healthy boys (6 and 2) but then had two miscarriages, and then conceived twins, and got today's news. I am beside myself. My OBGYN wants to do a CVS tomorrow. And although I have always been apposed to those intrusive tests I feel I have to. I am terrified that I will endanger my babies even more. It's such a conflict. I feel lost, and powerless, and would give up entirely if it weren't for my beautiful boys. Has anyone had a similar experience with such a high nuchal reading?

Dear Tryingtobehopeful, My heart really goes out to you. I totally know how you are feeling. A CVS is such a scary thing, but as you say, with a reading like that you may find you really need to know for sure one way or another what's going on. There is a fantastic helpline you can call if you need advice on ante natal testing or just want to talk about how you feel etc. It's ARC (ante natal results and choices.) look on google for it. They also have a parents support forum where you can post messages or read others experiences.
I am hoping and praying that there is an explanation why the reading is so high, and that they will both be healthy.
I know my story had a sad ending but so many others on here are fine.
The important thing is to ask for help and advice from all sorts of sources - mums, health professionals, ARC etc to
make sure you have all the support you need and aren't going through this alone.
Having my fingers so tightly crossed for you. let us know how you get on, or post more questions if you need to.
Love Lins xx

Hello tryingtobehopeful, I am so sorry to hear that you are in this position, and just wanting to add my support for the tough decision ahead, and to try to help by telling you my story.

I was not pregnant with twins, but at 11.5 weeks had a nuchal above 5 for my first second pg after a m/c. We decided to go ahead with the CVS the next day, having been given a 1:2 chance of Down's. In our case, although we prayed it would not be the case, the result was confirmed two days after the CVS, as positive.

Because the predicted chance of Down's for us was so high, our decision to have the CVS seemed straightforward to make. The risk was described as 1-2% loss from the procedure. I am not sure if this is adjusted if twin pregnancy.

Looking back, we were treated with great care and sensitivity by the nurses, who did their best to make it as comfortable as possible. The actual insertion of the needle, and sampling probably lasted about 3-4 minutes with some sensation of movement and discomfort but not intense pain. It felt longer, but I recovered very quickly.

Emotionally, I found the procedure terrifying, but not as painful as I thought it might be, and dp was with me throughout.

The relief of finding out just what was causing the high reading was a strong motivator for us to proceed, despite the risk, we just couldn't carry on without knowing. The procedure is quickly forgotten as the main focus is, of course, the outcome.

I am so much hoping you will have a positive outcome if you go ahead. I know how much bewilderment and distress you must feel in your situation. Seek all the help and knowledge you can. Bear in mind that Nuchal scores, as with all human measurement can be inaccurate. I am sure you will make the choice that is right for you and your babies. x

Lins, it is good to hear from you on the thread. I can't find any words that would go anywhere near comforting you at this time, it is so hard to recover from. I just hope that things get gradually easier a day at a time, and perhaps on here you can sense how much people care, and would love to be able to take the pain and sadness away if we could. xx