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.

@JO138 Mine was in 2003, and the hospital is now closed. It wasn't private though.

@Conorgog really sorry to hear that you’re also in this awful waiting game. Like you at the moment I’m feeling like it’s basically a done deal and I’m just waiting for the confirmation so I can get on and book a termination. I hadn’t thought of booking one pre-emptively like you have, maybe I should look into that.

@JO138 I’ve also been told my results won’t be until Wednesday at the earliest, maybe Thursday. I’m praying that they do come through on Wednesday - with the weekend as well it feels like a long tortuous enough wait as it is 😕

@DinoGreen

Really really feeling for you and am super glad I found this thread when I was early morning googling. It’s nice to have some support and know of similar situations.

Re the termination I would definitely ask, I know at my hosp - UCL they have a surgical list which gets booked up in advance. I’m now on the list for next week depending on results this week (and can still have surgical).

Thinking of you

I'm provisionally booked in on Wednesday for a termination which is the last appointment the hospital had this week. I am 13 weeks today and I can't get it at my care hospital unless I get my cvs results tomorrow. Which is anything but a sure thing right now! Stress!! Apparently most NHS hospitals don't carry out surgical terminations past 13 weeks + 6 days.

I called BPAS today who told me that I could make an appointment there but the timelines weren't clear. I am waiting for a call back tomorrow. They say that fetal anomalies move to the front of the line but you still need a consultation.

@dinogreen I'm not sure what your hospital has said about their date cutoffs but it might be worth looking in to because I think our dates are roughly the same.

Hope everyone is managing a little peace tonight. X x

My hospital don’t offer surgical terminations at all. Even below 14 weeks they refer you to BPAS. I seriously hope there isn’t a long waiting list with BPAS - I looked on their website and there are quite a lot of clinics within an hour or so’s drive of me though so at least if I can be flexible as to location I might have more options.

Today has been hard for me as my DS has mentioned the baby a few times. In an utterly heartbreaking moment he wanted to play doctors with me and was going through different parts of my body “checking” them and then he got to my tummy and said, “Is your tummy ok? Is the baby well?” DH was in the room also and we both just started crying and then had to quickly pull myself together for DS. I am absolutely kicking myself for telling him about it before my scan - just feel like such an idiot.

Oh @dinogreen I am so sorry. That must be really heartbreaking. We didn't tell my son only because we thought the next 6 mths he would be asking daily when the baby would arrive. We had a 9 week scan which was fine and had told most family so we almost told him. He kisses my belly alot and comments that I have a "big belly " and that is difficult enough.

Don't feel like an idiot. No one sees this kind of thing coming. X x

So sorry you're going through this.

I was in a very similar situation, I had the CVS and planned to terminate if the result came back as abnormal.

The result came back as normal. We were told we then had a 50/50 chance of some other "health" problem. Most likely a heart defect that would be easily treatable. So we continued with the pregnancy.

My DS has a genetic condition and is currently severely disabled. The CVS doesn't rule out genetic syndromes of which there are hundreds. So I would say if your going to go ahead , even if the CVS is clear, be prepared for anything. You may still have a child with complex needs.

Thanks for your message @Firstimpressionsofearth. Did you have the second part of the CVS testing for other genetic conditions? My consultant has ordered the full screen with the second stage taking 2-3 weeks to get the results. But I know there is a still a risk even if that comes back clear.

So we had both parts of the CVS, but nothing was picked up.

My DS condition was only discovered when he was a year old and the doctors agreed to a full screening on all our genes because there were scratching their heads over him.

I thoughts that's what they CVS does but apparently it doesn't it only looks for the more common conditions.

Well it’s bad news for me - my results are back already and my baby has Down’s syndrome. I wasn’t expecting them until tomorrow so I was at work when I had the call and now I’m a mess. Just walked straight out of work and waiting for DH to come and pick me up in a nearby car park.

I’m relieved we have an answer and there’s no more waiting to do. But devastated about the outcome.

I really hope the others waiting get better news than me.

Oh @dinogreen I am so so sorry. I can only imagine what you are feeling. I am just sitting on my couch having a good cry because st George's just called me to say they don't have the results yet. Won't likely be until tomorrow which puts me in total uncertainty about what my options are. I have been jumping everytime my phones rings today.

I know there is absolutely nothing that is going to make you feel better but I hope you can go home and cuddle your little boy and get a small bit of peace.

Thinking of you. Get home safe. X

I’m sorry your results are taking longer @JO138. The waiting is the worst.

DH and I have been talking and crying. I’ve texted my mum as I can’t face talking to her right now. We’ve got to pick up DS soon. Luckily I spoke to ARC earlier (before I had the results) and they gave me some good advice on what to say to him if it was bad news, so I feel better equipped for that conversation. I’ve also called BPAS to get things moving though they will take up to 48 hours to call me back apparently to arrange a consultation (why do I still need one of those?!) I pray there won’t be a long wait for the termination.

Fingers crossed you get your results very soon.

@dinogreen I'm so sorry. I just desperately need some closure. My husband has not been particularly supportive and has barely spoken about things and is seemingly just moving on before we even know WTF is going on. He's done more complaining about how difficult it will be for him to be away from the office than how terrible this situation is. I just feel like I am going through this alone.

I called BPAS Monday and they called me back just now. They were great and I have a consultation tomorrow. If it gives you any peace of mind the consultation is a quick 30 min phone call and they have also booked the procedure appointment for 2 weeks today.
It's quite far away (miles wise) but I don't really care. They also said that they going to put me on an acceleration list and it could be sooner. So 2 weeks seems to be worst case. I'm not sure if that makes you feel better but I hope so.

I hope the talk with your son goes as well as possible tonight. Sounds pathetic but my little boy has been the only comfort this past week so I hope you get through it ok.

Thinking of you. X

@JO138 I do feel better for having closure and I’m sure you will too. My DH is supportive but this has come at a terrible time for us - he starts a new job on Monday. Luckily he knows his new boss well (they worked together for several years at a previous company) and once we know when the termination will be it shouldn’t be a problem for him to take a couple of days off even if it is his first week or two.

Do you mind me asking whereabouts in the country you are? I am SE within 40 miles of London so BPAS said they might be able to see me quicker at one of the London clinics which is fine. It’s reassuring to know that the consultation is just a phone call, thank you for that.

My DS is also a great comfort. He is great. We just told him that the baby wasn’t growing and had died. It wasn’t an easy conversation and he did get a bit upset and started asking lots of questions about why he didn’t die when he was in my tummy and if he would stop growing too. It was very hard but at least it’s done now and we’ve moved onto playing dinosaurs. Though I’m sure he will ask more questions and mention it again for a while yet.

@dinogreen I am so glad the talk went ok. Children are amazingly resilient and I suppose for him it was still quite abstract.

We are in Surrey but inside the M25 so effectively London. We both work in London. I've been referred to a BPAS in SW London. Not the nicest area which is making me a slightly nervous but I hope the clinics are all the same. As you already have your results maybe the acceleration will work and you'll get a quick appointment.

I've just got off the phone with the midwife at the hospital and she walked me through a "medical " termination and suffice it to say that I would far rather wait 2 weeks. It sounded like 72 hours horrible hours.

I will hopefully hear from the cvs results tomorrow and get some clarity. I hope you have a quiet evening and manage some sleep. I don't know how you feel but I kind of hope that once I get the results that waiting 2 weeks will be less agony than these last 6 days of agony not knowing what is coming.

X

Well in a flurry of phone calls all has changed. I've had a result back and it's positive for Downs. I feel slightly relieved as the waiting was agony but now the reality is a termination of this pregnancy which is devastating.

I'm in hospital at 0700 for the surgical termination. Can't really grasp what is happening.

@JO138 I’m sorry you’ve got the same horrible outcome as me, but pleased for you that you can now have some closure and move forward so quickly with the termination. It just wasn’t an option for me at my hospital sadly even prior to 14 weeks (which I’m not until Saturday). Good luck for the procedure tomorrow and make sure you take some time this evening for it all to sink in.

Thanks @dinogreen I'm kind of in autopilot packing bags for me and jack. I'm still a bit nervous about tomorrow happening because the hospital has called me twice to say they normally would not admit me without a pre-assessment which the midwife said I don't need.

Also wanted to tell you that BPAS called me back with an appointment July 22nd so hopefully you will not be waiting long.

If you have any questions about the procedure don't hesitate to ask. I don't know if there is a way to message privately on this but if I get through it tomorrow I'm happy to give you any word of wisdom I might come away with.

Oddly feeling like this was my last chance for a second baby and I think what I'm mourning most Is now I'm 39 and maybe I've missed my chance. Isn't hindsight a bitch......

@DinoGreen @JO138

Wow, I’m glad you both got the diagnosis today, and there are no more questions you need answering and JO138 will be thinking of you tomorrow, please let me know how it goes. I may PM you once I get my diagnosis and get booked in. @DinoGreen let us know when you get booked in too.

Thinking of you both loads, crossing my fingers I get my results tomorrow.

Thanks also for your note @firstimpressionsofearth your situation sounds so hard, I’m really hoping I get I clear answer on mine.

I'm so sorry for both of you.

Oh ladies I’m so so sorry to read your thread.
I had a TFMR in June of 2017 with my little girl who had Edwards syndrome. I was 18w 4 days and was able to have surgical management with BPAS in streatham. Just to say that my experience with them was lovely. My consultation was a phone call and they simply needed the results of the CVS Sending to them. They were incredibly sensitive to the fact that this was a much wanted baby and they were nothing other than gentle and kind. There was a lot of waiting around which is hard but the procedure itself was not a problem. I had a GA and it really felt like going to sleep for a nap.
I would advise you both to grieve in whatever way comes naturally to you. I had counselling which helped. We also named our daughter and planted a tree for her in the national forest. Whatever you decide to do is fine there are no rules.
Be gentle with yourself and your families, it’s a tough road you’re walking and you have nothing other than my sympathy and love.

Thank you @Conorgog and I hope you get your results very soon too.

@KTD27 thank you for sharing your experience and I’m very sorry for your loss. I have thought about counselling but think I need to get through everything first and let the dust settle first.

@JO138 it’s very reassuring that you were offered an appointment at BPAS so quickly. Streatham is one of the clinics I can get to easily and it’s good to hear KTD27 had a good experience there too. I’ll update when I hear from them. Best of luck for tomorrow.

@KTD27 thank you so much. I was so blissfully unaware of how many women go through this but it is such a comfort to know that there is light at the end of the tunnel.

@Conorgog I will keep my fingers crossed for you. It would be so nice for one of us to have a happy ending!

@dinogreen once I am out of my appointment I will be cancelling BPAS. I've left it now as I'm nervous that tomorrow may not happen as they seem very displeased that I didn't get a pre OP assessment. I hope you get in very soon.

@Firstimpressionsofearth thank you for your thoughts.

I always amazed by the kindness of strangers.

X

@dinogreen and @JO138 I'm so sorry. Having been in the same position at the start of the year I know how hard it is. I echo @ktd27's advice to grieve in your own way, and not rush yourself.

We found naming our son and having some keepsakes of the pregnancy helpful. I also had a special piece of jewellery made. It has his birthstone in it and I wear it every day. The ARC-UK forum is great, and private.

From my experience There will be tears and sadness to come, but also laughter and normality.

I wish you strength for the hard days to come, be sure that you are strong and will get through this.

@DinoGreen @JO138

Just my results in, positive for Downs too. I feel utterly and completely relieved that that’s the diagnosis, - not having to wait for two weeks for the next lot, or the ambiguity of any of the other problems that were picked up in the first scan.

JO138, hope today is going as well as can be.