Very high NT measurement

[DinoGreen]

Hi all. The thread I didn’t think I’d ever have to or want to write.

I had my 12 week scan today with my second baby. My NT measurement was 5.5 and I have been referred straight to the fetal medicine team for an appointment with the consultant on Friday. I did see a specialist midwife after the scan who gave me lots of information on what it means and what the options are, so I feel pretty well informed right now. Based on the measurement our odds of the baby having downs or one of the other trisonomies are about 50%. If the baby doesn’t have one of these, there’s still a significant risk of some other abnormality such as a heart defect which could be serious or could not be.

DH and I are both agreed that we aren’t in a position to bring up a child with Downs or other significant abnormalities, so if this is confirmed then we will terminate.

My appointment with the consultant is on Friday, and I’ve been told that they will do another scan and that I should hopefully be able to have a CVS there and then, as long as everything is in the right position, and results would follow 3 working days later so around the middle of next week.

I’m just feeling like everything is an absolute minefield right now. I don’t know what I should do about work. I’m off on leave this week but due back on Monday, I was planning on telling them about the pregnancy then but I don’t know if I should now. On the one hand, it seems very private and I don’t really want to share what I’m going through with my (male) bosses. On the other hand, if we do get bad news, I’ll need time off for the termination. I also don’t want to be at work when I receive the call with the results, so will need to work from home that day, so I’m probably going to have to tell them something.

Stupidly, we already told my DS (aged 3) about the pregnancy after we had an early private scan at 10 weeks where everything looked fine. Not going to mention anything else to him for now but already thinking ahead to how I will explain it if we have to terminate.

Then, I’m worrying about the termination itself. The booklet the hospital gave me says that most hospitals can only do a surgical termination under general up to 14 weeks. By the time I get my results, I will be very nearly 14 weeks. The thought of having to give birth to a tiny dead baby while I’m awake is horrifying to me.

I don’t really know what I’m asking in this thread. Just wanted to get all my thoughts down really. I’m sure no one does but I really never expected to be in this position.

Oh FFS @DinoGreen I am so sorry. I got the run around so much on the day before my procedure and it just makes a difficult time so unnecessaryily worse! It's just stress and bullshit you don't need. I am glad your DH is there fielding calls for you. I am so sorry I didn't mention marie stopes earlier. The screening midwife mentioned it once but obviously due to the cost she didn't push it.

I really hope you are ok x

My DH has been a star. The nurse called back a couple of hours ago and said that 14 weeks is the usual cut off but that the clinic has said they can do it up until 15 weeks so I’m still ok for Monday. I’m relieved but just emotionally exhausted and frankly traumatised by all the doubt and uncertainty and the sheer number of phone calls I’ve had to make and take this morning. I’m keeping my Wednesday appointment with Marie Stopes just in case because at this point I feel like I just don’t trust BPAS not to fuck it up again on Monday. I’ve had to pay £85 upfront to MS for the telephone consultation but the rest of the fee isn’t due until the day so I can cancel it on Monday afternoon or Tuesday and not have to pay, but at least it’s there in case.

During my final call with BPAS where they ran through all of the numerous risks with me, they asked at the end if I wanted a keepsake like a footprint. I didn’t even realise that was an option with a surgical termination tbh and the question just absolutely destroyed me. I’ve said no because while I appreciate some women choose medical termination because they want to see the baby and hold it etc, personally I can’t bear to humanise it because it makes me feel too awful about what I’m doing. I decided I didn’t want to find out the sex for the same reasons. But because I didn’t think footprints etc were an option with surgical, I just wasn’t expecting the question and it’s just floored me. This whole process is so awful.

Christ I can’t remember that conversation with them at all. I didn’t think it was an option for surgical either and as for them cutting you off at 14 weeks I’m completely baffled as I had my procedure at 18+4.
I am really sorry they’ve been shit it absolutely is not what you need. Am crossing my fingers it’s an admin error and that it’s separate from the actually staff at the clinic.
One thing just to gently warn you about - they had to scan me before any procedure just to make sure things were in certain places but I asked for no volume on the scan and not to see the screen. They were very sensitive and gentle but I hadn’t expected to have another scan and it floored me honestly. take it as easy as you can over the weekend will be thinking of you

Oh @DinoGreen I can absolutely relate with the up and down. It's so hard. I got 3 calls from the hospital the night before my surgery saying that they didn't know if they could see me without a pre-OP. I was devastated and didn't cancel my BPAS just in case. If they had sent me home without the procedure I would have seriously lost my shit!

The surgeon did come and see me before the procedure and ask me if I wanted any or all of the remains to take home. I was totally floored. But she was really quick about it. I said something like "umm I don't think so" and she gracefully moved on and it was pretty clear that she had to ask but probably didn't think it was a great idea for me.

I really hope you are through the rollercoaster now and can just focus on what's ahead. We have no family here so had to make arrangements for my DS and drop him off at 0630 then have someone collect him from care then we didn't get back for him until 1930 so had to pack pjs and toothbrush etc. It was a very long day for everyone.

I haven't dealt with work yet but think I will likely end up taking the full 2 weeks because as time passes I have quite a few unanswered questions.

Hope you can relax and get everything sorted Monday. Thinking of you.

Thanks for the warning @KTD27 - they did advise me there would be a scan. I think the problem was not so much that they can’t do the procedure after 14 weeks full stop but that they’d booked me in for the up-to-14-weeks kind and if the clinic had said they couldn’t do it (apparently not all of them can or not all technicians will be trained to do it) then I wouldn’t have been able to have it Monday and would have been back on the waiting list. Thankfully though they can.

@JO138 I’m sorry you were messed around too. It has been such an emotional rollercoaster as you say. I’m just looking forward to it being over on Monday so I can start to heal. I’ve had to make arrangements for my DS too - we need to travel about 1.5 hours to the clinic with traffic and might not be back until late. Luckily my parents are nearby and are having him overnight on Sunday and Monday so we don’t need to worry about him.

The only other thing I need to do is sort out a visit to my GP next week as the clinic told me today that they can’t give me a sick note and I will need to see my GP for that. At least I can self-certify for 5 days so I don’t need to worry about that until the end of the week.

@Dinogreen

I'm so glad it's starting to move in the right direction for you. Will be thinking of you.

I'm at home watching mindless TV and having a MASSIVE glass of red wine! People keep asking me if I need anything and it's so difficult. I need answers and a crystal ball!! Physically I am ok but it's the what do we do now....and if anyone else tells me "you are only 39, you have time" my f'in head will explode!!! Sounds awful I know because they are trying to be kind.

Thinking of you today @DinoGreen

@DinoGreen @Conorgog

Thinking of you both today.

I hope it all goes smoothly @DinoGreen. I know today will likely be a pretty horrendous and very emotional day but all I can say is that by the time you go to bed tonight you will be able to start to focus on healing and moving forward however you decide. All the best to you and your DH today. Take care of each other.

Thanks @JO138 how are you feeling today?

Pre op tomorrow then in on Wednesday, thanks for the forewarning on scan, remains, giant pads etc etc. I get that some people have the attachment and see might things differently, I’m just not one of those people and just want to close it and move on.

Ditto on the answers, crystal ball etc etc. I was told by the ARC lady that once it’s finished, to call them and join the forum there as people are on it who are TTC after a termination for medical reasons or have conceived after one and share stories that way... I really really need some positive stories.

@DinoGreen

Thinking of you loads, hope your okay today.

@conorgog

I'm glad you don't have much longer to wait. I'm doing ok. To be honest now that the shock and physical process is over I have a lot more grief than I was expecting. Just questioning myself and my decisions and how things just went so quickly that I didn't really have time to think. But I sure do now!

I'm going to give ARC a call today I think. I still don't really understand my options for finding out more about the results and options for trying again and our risks.

Hope you are holding up.

Hey, just to say I'm a year on from you. Had my termination last July (can't believe it's been a year already). I had a lot more grief than I was expecting to. We were offered some counselling sessions which I really didn't think I needed. We went along anyway and I thought I'd be out in 20 minutes. Turns out I ended up crying for an hour and she booked us in for 6 more session. I remember my husband saying, I was a lot more upset than he had thought, so I guess I had just been trying to carry on bravely but there was a lot of deep down grief I needed to get out. I can tell you that 1 year on things are much better, it will always be there but it's part of my life, my experience but it's not all bad. I like to think it helps me appreciate what I have more, has made us stronger etc.

We also saw a consultant 2 months after the termination as part of the follow up. He said there was only an ever so slightly increased risk of a chromosomal abnormality happening again and to try again as soon as we felt ready. (our boy had T18)

I'm also now 24 weeks pregnant and was offered the Harmony test this time around at 12 weeks as well as another scan at 16 weeks. This baby looks well but they have picked up that the placenta is looking abnormal which they think is due to damage done to my uterus during the termination. I think I have just been unlucky there, as this is very rare. But baby is fine and it will just affect the delivery.

Thinking of you all, it's a terrible time to get through, be kind to yourselves xx

@Otto8

Thank you for sharing and congratulations on your pregnancy. It is quite comforting to know that there is life after this. Would it be rude if I ask your age? I'm 39 now and feel like time is against me and everything I read about pregnancy and downs at 40 is doom and gloom.

I spent an hour on the phone with a lovely woman at ARC today. She suggested that I call the CVS hospital and follow up on the kariotype (no idea how to spell that) to confirm that this was a one off scenario. The general message is that we should have hope to try again. It's something at least.

I had called the screening midwife at my care hospital whom I spoke to last week and she was not overly insightful. Then the call dropped. I tried back 4 times and gave up and no one has called me back so I called ARC. Pretty disappointed to be honest that no one from the midwife team has even followed up about next steps.

But again thank for sharing and I wish you all the best.

@DinoGreen I really hope you are ok. Thinking about you today.

Thinking about you all.
Yes to following up it’s a good idea. I met with the consultant at the fetal medical unit of the hospital and we talked through risks of it happening again. In the end we fell pregnant 5 months after our termination and had a NIPT at 9 weeks - absolutely no issues and we have a whirlwind of a one year old now. Oh and I’m 39.
I wish you all well

I was 38, now 39 so I too felt like time wasn’t on my side but I fell pregnant fairly quickly again x

Thank you for all the good wishes for today. I’ve not long got home. It went fine. For all BPAS were at absolute shit show at the booking process, the clinic itself was good, the staff were all very nice and kind and sympathetic to the difficult situation. I had quite a long wait as I had to have the cervical preparation pills which take 3 hours to work, but I was prepared for that and had taken my kindle and a few trashy magazines. Once I was taken down it was all over very quickly and I was discharged just after 2pm.

I feel odd. No physical pain. Had a few tears in the clinic, in the first bit when they scanned me (they were very sensitive and I couldn’t see the screen at all) and then when I was about to be given the anaesthetic. Since I came round though I’ve felt pretty numb emotionally. DH was upset but I just feel nothing. I’m sure it will hit me later or in the coming days. For now, I’m happy to be home, and relieved that my ordeal is now over.

@Conorgog best wishes for your pre-op tomorrow and then the procedure itself on Wednesday.

@dinogreen

I'm glad you are home safe and I hope you can get some rest. I feel like like has been the longest 10 days in history.

@KTD27 and @Otto8 thanks for sharing. I do feel much better knowing that this could have a happy ending.

@JO138 I completely agree, it’s very strange to think that it’s only 12 days for me since my 12 week scan when all that excitement and happiness so suddenly turned to shit. I even sat in the waiting room with DH and said that I didn’t feel nervous at all like I did with my first - well I should have 😢 I can’t imagine how anxious I’ll be if we do decide to try again but that feels like a long way off at the moment.

I feel completely fine this evening, no tears or sadness. I don’t know whether it’s just going to hit me later or whether I’ve just already done so much crying I haven’t got any left to do.

Hey @DinoGreen

Hope your doing ok this morning, let us know.

Thanks too @Otto8 and HUGE congratulations on your pregnancy, that’s so nice to hear. Is it placenta accretia they think you have? I’ve read that’s quite common, and as you have said, not too big a deal. (In comparison to everything else!)

Congrats too @KTD27 so thrilled for you, one year olds are such fun. Thanks for sharing your story, makes me have a little bit more hope.

Booking appointment today, going to ask if I can be early on the theatre list tomorrow - as like y’all have a child in nursery and don’t really want to have to organise outside care for him. (Lucky we live quite close to hospital so travel isn’t an issue).

@JO138 @DinoGreen

Honestly very lucky I found this thread has been so cathartic. If anyone else reading this is going through the same thing feel free to ask any Qs.

I’m doing ok this morning thanks @Conorgog. DH and I had a little cry this morning. I don’t regret my decision to terminate in any way but I do feel guilt. But I’m doing ok now and DH has gone off to work. Looking forward to seeing DS later when my parents drop him home after nursery.

Definitely see if you can get yourself at the beginning of the list, you don’t need to be worrying about pick ups etc. However if it’s any comfort, I was taken down to theatre at 12.30 (having had to wait all morning for the cervical preparation to work), woke up in recovery about 1.15, and was discharged by 3pm. They might be a bit more stretched for staff in the hospital to do the discharge etc but hopefully you shouldn’t have any timing issues.

I agree that this thread has been a huge help and I am grateful to all who have posted on it. I have joined the ARC forum today although don’t feel ready to post on there yet, I have had a read of some threads though.

@dinogreen
I'm glad you are feeling ok this morning. I've had my fair share of guilt as well and a hell of a lot of why and what if..... I am still struggling and have spent a lot of time just by myself doing not a lot. Normal things have really upset me because it is just such a definitive sign that this is it now, life is going on, I'm not pregnant anymore and it just really fecking sucks. But laundry still has to get done,groceries bought....life is going on which is a blessing I suppose.

Was sitting out with my DH having a glass of wine which was lovely but not something I thought I would be doing before January 2020. Just hits me at the strangest moments.

I've also been feeling guilty about not going back to work but as time passed I realise that I need some time and space before I can possibly give a shit about the corporate world......

@Conorgog I hope your appointment today went well and you can get seen quickly tomorrow. I ended up having to get a friend to collect and bath my DS but from the sounds of it BPAS will be far quicker to discharge you. Will be thinking of you tomorrow.

Has been a comfort to have this thread. Hard to believe the 3 of us landed in this position at such exact timing. As much as I would not wish this on anyone the shared experience has really helped me to not feel completely alienated. Xxx

How did the pre-op go @Conorgog?

@JO138 I’m feeling guilty about work too because physically I feel absolutely fine and have hardly any bleeding etc. However I know I’m not ready to deal with corporate bullshit either. My job is quite aggressive and I don’t feel I could cope with a client being nasty on the phone etc. This is the first time I’ve been off sick in over 10 years so I think I have plenty of goodwill stored up.

I got a letter today for a consultant appointment in October but it didn’t say anything else about what it was for. Phoned the maternity dept to see if it was some kind of follow up and she apologised but said it had been sent out before my scan/diagnosis etc and was just for me to see a consultant to discuss the birth because I had a big PPH with my DS 😢 She said I will be invited to a follow up though to discuss things like chances of recurrence, probably in around 6 weeks.

Thanks @DinoGreen

Pre op went well, just consent forms & full bloods etc I have to be at hosp at 7am tomorrow and because am TFMR I should be first on the list (depending on cervix etc) so that’s hopeful.

I asked about follow up - they said they don’t unless you request one. (And think you have something wrong). And they said they would let me know re karotype etc when cvs results come out - if there is something odd in that it will get flagged up to see a genetic counsellor...

Interestingly I got also asked to see my initial combined test results and based on that I was 1 in 560 - so glad they spotted the other issues on scan (which were fairly obvious anyway).

@DinoGreen @JO138

I’m also so unemotional about it all, possibly numb. But I did just cry watching the start of the first hunger games movie (no idea why I decided to watch it) so there is definitely something simmering 😂

@DinoGreen glad you're feeling okay today.
@Conorgog will be thinking about you tomorrow.

I just want to say thank you to everyone on this thread. You've helped me process things much better then I could have done by myself. I feel a little better knowing what's to come. Ready for it to be over now.

@Conorgog I hope you are feeling ok and able to get some rest tonight. Will be thinking of you tomorrow. I hope it all goes ok. Take care

@HungryPanda92 I hope you are doing ok. And I'm glad the thread helped. Take care

@DinoGreen I'm so sorry about the consultant letter. I got my maternity exemption letter through 2 days ago. Had a good cry.

I've still not heard from the screening midwives even though I've phoned a couple of times. Not sure what to do about speaking to a consultant about the future, risks etc.....