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Scan yesterday, 8mm Nuchal, Probably Turners. What to do and can I bear to try again at 43?

(7 Posts)
Sothisisshit Sat 17-Sep-16 08:15:09

So many questions here. I am 43, pregnant with a slightly unexpected but very much wanted third baby (recognising that we are so fortunate to have the two we have). Yesterday at the scan they found a nuchal of 8mm. They seem pretty sure its Turners so we're now awaiting results of CVS, to arrive on Thursday. I am totally devastated. And a bit confused. The prognosis seems pretty desperate and I don't want to be pregnant for a moment longer than I have to be so would like to end this pregnancy as soon as possible, but on the other hand don't think I can/should until we have absolute confirmation from the CVS. They seemed at first to identify issues with the heart (the heart rate was a bit high) but then during a second scan, said they couldn't really tell because the baby is so small and was in a difficult position. They also said that they thought that part of the intestines were still in the umbilical cord.

I wondered too about the termination (hate that word). They want me to organise this myself at a private clinic, eg Marie Stopes. I don't know why, but I thought they would do it at the hospital. I somehow feel more terrible about going to a private clinic, surrounded by people in very dfferent circumstances, and I mean that with no judgement intended at all.

I am also though already thinking about whether we can bear to try again. I just don't know whether having a baby at 44 (and a 16 year old at 60!) is just too old. Or whether I can go through this again. Gutted that this was probably our last chance, but desperately sad that this dream of a third baby seems over now.

So many questions. Anyone been in anything like this position?

Grace1980 Sat 17-Sep-16 08:53:58

Really sorry to hear you are going through this. I have not been in your position but my friend's daughter has Turners so wanted to just tell you a little bit about it. She is now 5 years old, in mainstream school and the only people who know about her medical history are those her mum has chosen to tell. It's hard to tell that she is anything other than a normal little girl. I don't know if there's a 'spectrum' of Turners and whether this little girl has mild symptoms. I just wanted to offer you a little hope and share a positive story. Xx

Sothisisshit Sat 17-Sep-16 10:25:50

Thanks Grace. I think that the extent of fluid around the baby is so high that this indicates a very serious problem, perhaps meaning that the baby is unlikely to make it to term in any case. But that is a lovely story. Thank you.

zopeckham Sat 17-Sep-16 14:37:11

Hi OP,

So sorry to hear you are going through this. I hope you have some good support. My first pregnancy was an unexpected but much wanted pregnancy a few years ago in my early 20s and had a similar high nuchal fold measurement, wait for test results and then diagnosis of Turner's syndrome. I ended the pregnancy at 16 weeks but was very torn by doctors saying all symptoms were getting much worse as baby grew and miscarriage imminent and not bring able to bear this, with advice that babies surviving to term could have a good quality of life.

I think if your decision is to stop the pregnancy, they should offer this to you on the NHS. They did to me. If you have the strength, maybe you can advocate for this as it can be a difficult time and it should be somewhere you feel comfortable. I think it's a bit outrageous they are asking you to organise this yourself and could you talk to GP about it?

I had an induced delivery as opposed to a D&C as I felt this was important for me but I would reccomend looking up ARC online - Antenatal Results and Choices. They are a charity and have a helpline and non judgemental advice/info about chosing to continue a pregnancy and all options if not.

I had my baby on a labour ward in a separate room. It was very hard because my body didn't seem to want to give up my baby so I was there for a few days, in a private room, but listening to other healthy babies bring born, and was often not prioritised by doctors dealing with energency deliveries etc, however ultimately it was the right choice for me as I was cared for by midwives who respected my body, labour and baby when she was born, and the hospital chaplaincy organised commerorative services for this situation.

However I know you can also access care in this situation through gynaecological departments which some people may find easier.

Anyway, I very much hope for a positive outcome for you, and hope it is not too upsetting to hear my experience, but I felt very alone experiencing it so wanted to share.

Take care of yourself and I wish you all the best with your decisions,

Sothisisshit Sat 17-Sep-16 14:56:49

Thanks so much zopeckham, it's so kind of you to share your story, and I am so sorry for your loss. I was really taken aback that at the end of this truly awful day that had started with such hope, they just gave me the website address for marie stopes and told me to sort it out. I don't know ... it felt as though at that point they had pretty much washed their hands of me and I was on my own. The doctors were kind in a way but while doing the CVS were laughing and joking. They told me they were trying to lighten the mood which on one level I can understand but ... anyway.

Anyway, I hope very much that things have worked out for you since, and thanks again.

Nikki2ol6 Sat 17-Sep-16 17:21:22

Slightly different for me. But at our 20 week scan (everything was perfect until that afternoon) we were told our beautiful little boy had some heart defects. A hole was mentioned and we thought well plenty of people have a hole In their heart...... they went on to tell us the great vessels didn't look in the right places but we must see a specialist and were told to prepare to hear the worst. 5 days of stressing, googling the words she wrote in my notes, we had our app!!! We were told our baby does have serious heart defects. As we took the news in they told us we should consider a termination. We asked why this is fixable?? They told us our chance of a baby with a chromosome abnormality was 1in5! They left us alone to think this thorough, a midwife came in and asked if we had decided for the termination. I couldn't do it. They then offered us an amnio, I said how soon can we do this and she said in 10 minuets. So we got thI amnio done, the first results were back the next afternoon and were normal for downs Edwards and pataus. 15 days later of stressing and not sleeping we received an all clear result.
So our beautiful little boy is going to be kept a very close eye on during pregnancy and to have heart surgery at just a few days old, and open heart surgery before his first birthday. it's so scary, I know how you feel but those results could well come back normal like mine did, what was your baby's heart rate ?? Xx

zopeckham Sat 17-Sep-16 22:41:57

Hi Sothisisshit,

Oh I'm sorry that they weren't really acting appropriately when they were doing your CVS - it makes such a different. I still remember some of the things said to me by well meaning but very misguided doctors during my scans and tests.

I really don't think that is ok that they directed you to Marie Stopes to sort out yourself, can you talk to your midwife? They were the ones who coordinated things for me and they also referred me to an obstetrician to discuss options as well before hand. They also organised for a check up afterwards for me with an obstetrician a few weeks later. You are just as worthy of NHS care as any other mum!

Thank you - yes I am pregnant again and all went well with my 12 week scan last week so that has been a massive relief.

I think an unplanned but wanted baby in this situation can bring up lots of emotions as it seems like such an unexpected but special chance. I had to wait a while for my hopefully rainbow baby until I was with a partner I wanted to have children with at the right time.

Lots of luck in making your decisions now, and if needs be, about a future baby. I found counselling afterwards really helpful, and I hope that you manage to access nhs care,

take care

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