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.

@Conorgog I’m so sorry. What a thread - you’d have hoped just one out of 3 might have had good news. But like you I felt relief that we have a diagnosis and the waiting is over.

I hope @JO138 is doing ok. I have had the day off work today, just been bumming around watching box sets. I was hoping BPAS would call back but they haven’t so I can expect that tomorrow now. I’m going to work tomorrow but from home. I needed to take today but too much bumming around isn’t good for me, it gives me too much time to think and dwell.

@Conorgog I am so sorry but I absolutely understand the feeling of relief.

@DinoGreen I hope you are feeling ok and managing to keep your mind occupied

If I can give you both any peace the surgical procedure today was only painful in the emotional sense and the staff was so compassionate and caring it was absolutely bearable. I got there at 0715, was in a bed pretty quick then headed to theatre by midday. They put me under which was welcomed by that point and I came round around half past 1 in the afternoon. I had no pain or discomfort and the worst was actually a sore throat from the tube. I sat and had biscuits and tea and sandwiches and was discharged around 1730 pm.

I'm home now. I don't know if this sounds horrible but this has been a very difficult pregnancy. I've had unbelievably fatigue, vomiting, I've lost 2kg, I've had joint pain and just felt generally unwell and not really functioning for most of my pregnancy. It has been nothing like my first pregnancy. I have an odd sense of calm and I feel like things are as they should be. I hope that doesn't make me sound cold or uncaring and I may feel very differently tomorrow but I just feel like I have made the right decision for me, my family and even my baby and things were obviously never "right".

If either of you has any questions please don't hesitate. A close friend of mine has been through this and she gave me some advice before I went in which did help.

Thinking of you both.

Take care of yourself. X

@JO138 I’m glad to hear the procedure went ok for you. If you don’t mind me asking, do you have a lot of post-op bleeding? Or is it just a bit like a period?

You don’t sound cold or uncaring at all. There is definitely no right way to feel in this terrible situation. I seem to be swinging between tears, anger, feeling sorry for myself and then feeling oddly detached.

I’m feeling frustrated that I’m no further forward today. BPAS did eventually call me late afternoon, and have booked me a telephone consultation on Saturday morning, but said they have not been able to find me an appointment yet for the termination itself. I don’t understand how they can’t find me one. I’ve said I’ll travel, even if they give me one that’s like 2 weeks away at least then I’d have a date to work to. I’m just in this horrible limbo period now of still being pregnant. I’ll call back tomorrow and see if they have managed to find me anything.

@dinogreen I'm so sorry you are having to wait. I don't know if it will help but I have an appointment at Streatham on July 22nd. I am going to cancel that tomorrow and I don't know if there is any way they can watch for that cancellation and take the appointment as really you should be on the same acceleration list that I was. I don't know if you want to speak to them before I cancel. Let me know.

In terms of the other I have had bleeding but no more than a heavy period and really only for a few hours while I was still on the ward. They did tell me to expect bleeding and cramping for 3-5 days but I haven't had any cramping at all. Do bring like a nighttime Always pad supply. The long ones if you know what I mean.

Due to the general anaesthetic I can't drive for 24 hours and I had to sign a declaration that I would be in the care of a responsible adult for 24 hours. Also no lifting or exercise for 2 weeks which includes little boys so that is probably the most complicated thing. Oh and I would also say have a decent drink of water at the last moment of your cutoff. Mine was 0600 this morning and by midday I was uncomfortable with thirst.

Let me know about the appointment.

X

God DinoGreen that’s really shitty.

I don’t know much about them, but is it a central booking line or can you ring around?
That is so so frustrating.

Thanks @JO138

I have a few questions so might PM you, but in the meantime can I just add to the list of open forum subjects what kind of anaesthesia you were offered?
I have my pre op appointment next Tuesday 😕.

Just letting you know, I’m very detached, almost completely unemotional about it. IDK why, it’s very strange in itself, I think people just cope in various different ways. No one can judge you.

I also had a really good chat with one of the ladies from ARC today. Highly recommend - she covered a lot, such as the termination, trying again after a termination and explaining the CVS in a few more details.

Thank you @JO138. I am on the acceleration list apparently. I specifically said today I could do Streatham so hopefully if you cancel I will then be contacted - I will give them a call in the morning perhaps.

Thanks for the tips too re water and sanitary towels etc.

@Conorgog I spoke to ARC too and they sent me a very good detailed booklet about the termination process which I found very helpful.

Hi @conorgog . I really relate to that. I was up and down but I got quite mechanical about the whole thing and at one point I said to my husband that I hope it didn't indicate an impending breakdown as I felt so totally calm and detached. I am naturally a calm and pretty linear person anyway.

Happy for you to PM me any other questions but on the anaesthetic front I am a bit of a tricky case as I have lots of drug allergies. I was given a mix of sedative, pain killer and anti sickness and I woke up with no illness or fog. They put in in the IV and then started by giving me something that would make me "feel high and not be aware or care where I was ". It just instantly relaxed me and I remember nothing until waking up in recovery.

I hope your pre opp goes well.

Hey @DinoGreen how are you, did you manage to get booked in? Have been thinking of you!

@JO138 how are you feeling today. Thanks again for all the detailed procedure info above, it’s so helpful.

Just wondering if either of you got your Papp-A and HCG blood results and what they were? I never saw mine and have immense curiosity as to what they were - which I will ask when I do my paper work for next week.

I may have gone too deep into a medical journal dive, probably gearing up to scare myself silly as we will try for another ASAP. 🙈

@conorgog I didn't actually get my results and was only told over the phone about the downs positive. I did ask the surgeon before the procedure to confirm there was no doubt. My hospital midwife care is all online and I suppose I should have checked the app as my previous bloods were uploaded there but honestly I uninstalled it as soon as I found out because the notifications were killing me.

We are firmly on the fence about another. I am more keen than my husband. I am 39 and my son is 3. Worried that I've missed the boat. I didn't feel ready for a second until he was 3 and we were lucky to get pregnant right away. Now I just don't know if I'm past it now.

I am going to speak to someone about the chances of it happening again. Fingers crossed it's not more shitty news.

Hope everyone is getting forward with their appointments and such and feeling as good as possible. Such a totally shite time.

@JO138

Yes that’s the same as me - I think the bloods results were same day but they haven’t shown up in my ‘test results’ section of my app on phone either. Wonder if they just don’t add them in.

I’m such a planner, not control freak planner, but I like to know all the information so I know all the options. I spoke to ARC about trying again, they said cvs full results will tell you more about what type of DS it was and if there is anything else you should know before you do.

• we too have a 2.5 year old boy and waited for the ‘right time’ to get pregnant. I am finishing my masters atm so didn’t want to have a baby before I did that, kind of kicking myself now, but hey ho.

How are you feeling today?

No more news for me yet @Conorgog but thanks for asking. I called BPAS earlier and they said they still don’t have an appointment for me and will call me as soon as they do. It’s horribly stressful not knowing how long I could be in this position for. I asked what the wait is like for a “standard” booking ie not the accelerated list I’m on, just so I could get an idea of the worst case scenario, and she said on that I’d be looking at 6th August but hopefully it should be much sooner than that. Which is some comfort but not much. I’m terrified I’ll start feeling it moving if I have to wait too much longer which will make the whole thing even more horrendous.

I don’t know what my bloods were as I never had them done. They said I could have had them if I wanted to but there wasn’t much point really as even if they were perfect, I’d still come back high risk because of the huge NT measurement and need the CVS regardless, so I didn’t bother.

DH wants to talk to the midwife about recurrence chances too. Personally I feel right now like I don’t want to try again and I should just stick with the one DS I’ve got. But that’s emotion talking and I might change my mind.

@JO138 I hope you’re having a peaceful day recovering at home.

@conorgog

Oddly I feel ok. I have no physical symptoms and I think that the waiting after the scan was so bloody horrific I feel mostly relieved. I am quite bloated and look pregnant which is the hardest part.

I am absolutely a control freak. Typical engineer! I work quite a lot and just didn't think I could handle 2 with childcare drop offs, pick ups etc and we have no family around. Once my little boy was 3 I felt ready and got pregnant the next month. Too good to be true unfortunately.

I'm worried that a 4 year gap between them might be too much. I don't know. Feels mad to be thinking about it.

@DinoGreen I'm so sorry that you are in limbo. I did cancel my appointment today so I hope you can snap it up. Have you heard of Mary Stopes? My midwife mentioned them. Maybe you will have better luck. www.mariestopes.org.uk/

Thanks @JO138. My DH has just spoken to Marie Stopes for me and they’ve said they can do it by the end of next week at a clinic not too far from me. The downside is I’d have to pay (approx £850) and see them for an in-person consultation first as they do not have a contract with my CCG so I’d be a private patient. At this point I don’t give a fuck if I have to pay, I just want it done. I’m going to give it until tomorrow lunchtime to see if I hear from BPAS and if not I’m going to book it with Marie Stopes and swallow the cost.

That is crazy! @DinoGreen. Can you book both, then keep harassing BPAS for an appointment next week? I’m so sorry that your having to wait like that, I completely agree the 6th of August seems way to far away.

I’d do the same as you. Sending you lots of luck.

@DinoGreen I'm glad that gave you some options but it a bit unfair that you have to be out of pocket. I am with you though that it's worth it for your sanity. Will keep my fingers crossed for BPAS though.

Hey @dinogreen so sorry you got the results you got but pleased you feel some relief at not having to wait for full karyotype. What a shitshow re:the hospital though! Hope they can get u in on nhs sooner elsewhere.

Sorry for you other ladies here whove had the heartbreaking news too.

I echo what previous posters have said though- arc are amazing, the arc forum is even better and although tfmr is a soul destroying process, youre not alone and theres always someone to chat to who gets it or can offer advice so please try not to feel alone xx

Thank you for your message @primarywoodle. I really hope BPAS can sort themselves out too. Even if I book Marie Stopes, I’ll stay in the system with BPAS so that they can hopefully come up with something I don’t have to pay for, but I just need it dealt with now.

I have been in touch with ARC and they have been really good so far. They said to contact them again after the procedure and I can then join the forum. Glad to hear it was helpful for you.

I finally heard from BPAS and they have booked me in for Monday at Streatham - so it looks like I have managed to pick up your cancelled appointment @JO138. I’m feeling so relieved that it’s now booked in and I haven’t got much longer to wait. Also that I don’t have to go back into work (I’ve been working from home yesterday and today, but for various logistical reasons would have had to go back into the office next week if I didn’t have an appointment until eg the end of next week).

@DinoGreen

That is fantastic, (in the best/worst way possible). Really happy for you. Must have just taken a bit of processing time.

Let us know how it goes, how your feeling.

Thinking of you

@DinoGreen thank fook for that!! I am so relieved for you! I was hoping to hear today.

@Conorgog have you had your assessment yet?

I am thinking about calling ARC. I would really like to understand the test results, the chances of reoccurring, whether or not we'd be foolish to try again. Right now my DH is not keen but the surgery really freaked him out and he thinks trying again would be putting me at risk and he doesn't think it's worth it.

I don't know. Just wish I knew what the right thing is.

I hope you are both doing as well as can be expected.

I’ve been feeling so much better this afternoon thanks @JO138, knowing that I’ve got it booked and so soon. The limbo was horrible.

I was supposed to get a call from the screening midwife today who I was going to ask about chances of reoccurrence, but she didn’t call. I will follow up though as I’m keen to know too - though we’re the other way round to you at the moment, DH is keen to try again ASAP while I’m more thinking let’s just stick with one. But I expect we all need to take some time to let what’s happened sink in before we make any big decisions. Do call ARC, they were really helpful and knowledgeable when I spoke to them.

@Conorgog I can’t remember when you are booked in for - is it early next week?

It feels like my ordeal will never be over. I had my telephone consultation with BPAS this morning and it turns out they had my dates down wrong (no fucking idea how) and the procedure they booked me for on Monday is only for up to 14 weeks - I am 14 weeks today so will be 14+2 on Monday and apparently this 2 days makes all the difference. The nurse doesn’t think they will be able to do the 14 weeks plus procedure for me on Monday but is going to find out and call me back.

Honestly my entire experience with BPAS has been terrible and I definitely won’t be recommending them to anyone who finds themselves in this sorry position (or just generally needing an abortion) in the future. By contrast Marie Stopes have been fantastic - I was in absolute bits after the call with the nurse as I’ve totally mentally invested myself in this all being over by Monday. So my DH got straight on the phone to Marie Stopes who have managed to book me in for Wednesday. If BPAS miraculously ring me back and say they can still do it on Monday then great, but I have no confidence in them whatsoever at this point. I don’t understand how they can have my dates wrong - I’ve never been asked to give them before now, so they must have taken them from the NHS referral paperwork, so either that’s wrong (but it’s right on all my scan reports etc) or someone at BPAS has transcribed it into their systems wrong.

@DinoGreen

No feeking way, what a shitshow.
Gosh I am so sorry, as if anyone in this situation needs to deal with that. Can’t believe it. When are they calling you back? I’m so so wild on your behalf!

I’m booked in to do my consent forms etc on Tuesday, then procedure on Wednesday - il be 13+4 (I think, like @JO138 I deleted all my pregnancy apps etc 😕)

Sending lots of luck

Also NHS website says it can be carried out up to 15 weeks?! And if Marie Stopes can do it why can’t they?! Grrrrrr!