NT results, not knowing how to feel.

[sendhelppreferablypimms]

I've namechanged for this but I don't know why the details probably out me anyway.

Probably in the wrong section too 🤷‍♀️

I'm having a really emotional few days. I've coped ok up to now but thinking about it my feelings haven't changed, I've just bottled them up and been strong and acted chill so that things are nice for everybody else.

I'm 37 weeks pregnant. Baby no3
I declined to have any nuchal testing. I declined this with dc 1&2 as well so don't know a huge amount about it all really.

Went to the 12 week scan. Sat waiting for them to say oh everything looks normal and could see how concerned they were. We were taken into another room to be told baby had a 4.4mm cystic hygroma on its neck and we would need to be seen in the hospital. Had a very distressing appointment where everything was explained to us. We were offered amino, cvs, and nipt. We were pressured heavily into amino and thinking about termination. He must have asked about 70 times in one appointment.

I declined any further testing as I didn't want to be put in the position of deciding about termination and I didn't trust how accurate those tests are, plus risks of miscarriage.

Drs explained we have a 1/5 chance of having a baby with a chromosomal abnormality, downs/Edwards/turner ect. The words "not compatible with life" were used a lot.
There is a 1/10 chance of baby having a structural abnormality.

Family support wasn't really helpful. We spoke to family at the beginning when it was explained, every single person we spoke to except one, all said "well if it was me I'd have had the amino" which wasn't really helpful to be honest, and nobody has asked since. I knew I had to make peace with my decision and just get on with things hoping for the best outcome.

On one hand, I'm hopeful as nothing additional has been picked up on scan, and although they have explained it doesn't actually change the risks, the hygroma has decreased in size. On another hand, I'm fucking terrified. I've held it in and been at peace with it but the closer we are to the end I'm just fucking terrified the worst will happen. I saw somebody else's notes (I work in a medical job) that said NT results normal, risk 1-150 000 which really hit home as it's quite different from 1/5.

To top it off I also have my daughter in hospital next week. She's 3 with cataracts and she hasn't made any progress with her vision; so now we're at the point where we need to decide about surgery before she starts school in September and I'm terrified about that too.

I'm coping on the outside but falling apart on the inside. I'm so terrified for both of my girls, it's probably not even rational. My partner really doesn't seem fussed or worried at all so I feel irrational.

I guess what im asking is how irrational am I being? Because I've bottled it up to the point where I feel like I could just cry and not stop for about 3 days. Which is making me think there must be something wrong with me. Would other women feel like this in this situation?

I'm soo sorry you're going through this.
Please talk to someone about this, your partner, friend, family or a midwife. Bottling it up will only make it worse.

I can't give any advice other then to do what feels right for you. You were so strong already not letting anyone push you into their decisions.

I would talk to your partner about it. He might be bottling it up as well so to the outside you both look fine but inside you both need to release. Even if he is handling ok that doesn't mean you have to. It's perfectly normal to feel worried and overwhelmed with such big things. Talking it through with him could help you feel so much better.

It sounds perfectly reasonable to sit and cry for three days. Make sure you have a good supply of chocolate and tissues, and indulge yourself.

I'm sorry the advice you've had seems to have been poor. I don't know much about it, but did you say you were told the risk was one in five, but you think it's more like one in 150000?

Anyway, you made a perfectly valid choice early on, and worked out your options then. All you need to do now is be kind to yourself and wait and see.

pickleme, the OP saw that someone else had a 1 in 150 000 risk. Hers is 1 in 5.

Mate there is nothing irrational about feeling worried right now. One issue would be enough to be getting on with, but both at the same time is even harder.

Has your obstetrician said anything about what happens once the baby is born? Would it help to know what to expect? Have you been in touch with any support groups? the genetic disorders charity might be able to help.

It's all very well for your family to say that they would do this and that but you were presumably not prepared to have an abortion so I can see why you wouldn't be willing to risk an amnio or CVS just to get the news early.

I would guess your DH is either as worried as you or he's trying hard not to let himself think about it.

One positive thing is that, as the pregnancy has progressed this far, your DD has survived, and is less likely to have one of the catastrophic genetic disorders - that is if she has any. It's still at least 4 out of 5 that she's fine.

The risk to us is 1 in 5, but I saw on another ladies notes that the normal is 1 in 150 000.

So it just put it into perspective how far out of normal range we are and how low our chances are of having a healthy baby.

I just feel so gutted.

That’s an awful lot to be holding onto. I agree, talk to your midwife and partner. Will they deliver the baby a bit earlier if it’s at risk?

I've got a c section booked for 39 weeks. They have said they will have the neonatal team at the birth to check her and assess the need for genetic testing ect.
I have to have my section under a general anaesthetic which I don't think helps with the anxiety because I won't know what I'm waking up to. I just keep hearing the words "not compatible with life" in the back of my head and the closer it's getting, knowing I've got to face surgery myself, waking up not knowing how my daughter is, and then put my other daughter through surgery after that is really upsetting me.

The fact that they haven’t picked up anything else on scans is really positive. It doesn’t categorically mean there is nothing wrong but it’s definitely a good sign. 1 in 5 still means there is a 4 in 5 chance that your baby doesn’t have a genetic disorder.

Why wouldn't you have the NIPT just to see how that comes out? It's just a blood test.

Oh love, I can’t even begin to imagine the stress and anxiety you must be feeling right now

Ultimately you have to put yourself and your daughter in the hands of the doctors now. Easier said than done but everyone will be working for the best outcome possible for both of you. It’s so hard to hand over complete control of a situation but this is something you can only live through and essentially observe.

It’s going to be hard but don’t forget you’ve made your decisions based on the love you have for your child. There are/were no right or wrong answers so you can only do what your gut tells you to.

I wish you strength through this time.

Seeing what your friends notes said wasn't really helpful to you i don't think.

The risk is the same as it always was - you have a 4 in 5 chance of all being well.

But I agree you are well within your rights to have a good cry and as a PP said chocolates and tissues on hand.

I could be completely off base here, but it sounds to me like you may be having a delayed reaction to the initial problem discovery - and are just starting to process the seriousness of it.

I'm so sorry you're going through this

Maybe you need to do some planning for the absolute worst - and there's no gentle way to say this - but if you're able, to think about how you would cope with a severely disabled baby? Are you and your DH comfortable with extreme medical interventions to prolong life, for example? Facing the worst might help you feel a little more in control, if you can

I'm so sorry - I really hope your baby is perfect

After our 12 week testing we came back as 1 in 37. We have a wonderful little girl who is nearly 3 but just before her first birthday I lost a baby at 14.5 weeks. It was traumatic and this pregnancy was already very stressful for us.

We ended up getting some advice from my GP aunt who had obstetrician consultant friends. We paid for and had the NIPT test, sometimes known as Harmony because we felt we had to know. Our results came back as absolutely fine but it was so so stressful waiting to find out. I'm nearly 17 weeks now and already feel stressed about the 20 week scan. I'm trying not to be because ultimately what will be will be and there are no guarantees but I can understand the stress you are feeling and I do hope all is well for you and your precious baby.

@blackteasplease it wasn't my friends notes. It was another patient about the same age as me, who's notes I had to process as part of my job. It just hit home when I read that part. Which I needed to do, to code the results to her medical record.

@fiveredbricks - why repeat the point the OP said her relatives made and which she said she found unhelpful. She is 37 weeks nw wo NIpT is no longer a choice and really there is no point to your post.

OP - we were given a 1 in 10 risk factor and had a healthy baby so it can happen even at high risk. I’d ask for a specialist midwife appointment ASAP so you can talk through your fears. I can only imagine how scared you are.

I would ring ARC to talk this through
www.arc-uk.org
They are amazing. I have been in this position with a large nuchal, I had cvs and it was trisomy 21 and we tfmr.
Good luck

Of course you’re within your rights to decline any antenatal tests, but thinking about it another way - knowledge is power. It’s not necessarily about pressuring you to have a termination, but understanding what is going on with the baby so that the HCPs are prepared and the right support can be in place.

Oh blimey, I’ve just scrolled back and see you’re 37 weeks, so everything I said is irrelevant really. Sorry.

This late stage in pregnancy is hard without extra worry, you poor thing. For whatever reason you made the best decision for you at the time not to have further testing, that is a very personal decision for you as a couple and only you could decide what was right for you. I think the thing to remember is that whatever is or is not wrong with the baby it is as it is, there is nothing you can do to change it or control the situation and if there is anything wrong it won't be because of anything that you did it will purely be a matter of chance/genetics etc. At this point the only thing you can do it wait for your arrival and take one day at a time.

Why wouldn't you have the NIPT just to see how that comes out? It's just a blood test.

Thee is a massive list of reasons that people choose not to have testing. NIPT is not considered diagnostic so further invasive tests are usually reccomend if the results come back high; some women may choose not to have it because they definitely don’t want invasive testing. Some women are going to continue their pregnancies regardless so feel it isn’t necessary. Some women would just rather not know. Some women find the process of screening and having odds more stressful than not knowing anything. I’m sure there are countless more reasons.

I could be completely off base here, but it sounds to me like you may be having a delayed reaction to the initial problem discovery - and are just starting to process the seriousness of it

I think that’s a very astute observation. It’s not surprising really is it.

There really is no blueprint on how you should or shouldn’t feel. All of your feelings (even the mixed up confused ones) are valid in themselves. It’s dificult to live through but they’re all exactly how you should be feeling. Same goes for your dp even if it doesn’t synchronise with your feelings.

Wider family and friends don’t matter.

Pretty much everything @Cornettoninja said about it being a predecessor to invasive testing which we didn't want. Because I knew I didn't want to terminate and I didn't want to spend 9 months feeling like this. I realise lots of people think that's stupid. I think pretty much all of our family have hinted at that.
I feel like I need a hug and 3 days in a spa to just cry and emotionally regulate myself. I don't think it helps that he just seems so head in the sand about it all.

It sounds like the idea of waking to bad news from your GA is particularly distressing, and with that in mind, would it be worth trying to find out if you could still do e.g. the Harmony test? IDK if there is a window for doing it or if it's just 10 weeks onwards. I would imagine you would have to go private. I know a good clinic in London, they did all our scans and stuff (we had twins, I have a translocation, so they were looking for Patau's as well as all the others)

Sorry to hear about this incredibly hard situation for you. How you are feeling sounds completely natural. I know a pp didn’t mean any harm in saying ‘I hope your baby is perfect ‘, but for me that’s so off the mark. If your baby is disabled, they will be perfect. They will be yours and you will adore them. You don’t meet many people these days who decline testing because they don’t wish to consider termination, and I think that’s incredibly admirable. You’ve already put this baby’s life ahead of how any difficulties for them could make you feel, which is truly amazing. A friend of mine had a baby whom she knew was very likely not to survive. She sadly did not but she felt it was not her decision to make and she gave her a chance and had no regrets about that. And having said all this, there are lots of reasons to be hopeful within your subsequent scans etc.

Why do you say you feel something is wrong with you for wanting to cry for days? I think I’d be feeling the same mix of emotions as birth gets closer, and you worry for your 3yr old. Does she need the procedure so close to the birth? Seems difficult timing.

I think regardless of the outcome you may want to consider counselling. You said you didn’t want invasive procedures and then wonder but you are actually wondering now as well. Talking about it, regardless if your baby is healthy or disabled, may be a step to acceptance what happened during this pregnancy and how you bond with your baby.