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?

It was @notmyotter that deserves your credit for that

Your dh sounds very much like my dp. He doesn’t talk through ‘big’ emotional subjects. He processes them very differently to me.

There was a very small problem with my dd found on the twenty week scan. I was obsessively worrying about it and he very bluntly told me he was not going to spend the rest of my pregnancy getting upset over something we had no control over. I was pissed off at the time but with hindsight he was right. Maybe your dh feels the same way?

Massive hug to you o p. Our odds were very similar, and our daughter was born with no abnormalities. Would there be a possibility for you to have the amniocentesis now, before she is born. As far as I know , the risk is of going into early labour, but at 37 weeks that shouldn't be too much of a problem? Good luck either way and whatever you decide. It was the hardest thing we've ever done. Lots of love to you.

Big hug to you. Is there a possiblity of not being put to sleep for the CS, I can appreciate the fear of what you will wake up to.

Your reaction is perfectly normal - you are under constant stress, real stress. Permanent worry.

Your choices are perfectly legitimate. I wish you all the best. You have clearly made the right choice for you - the bottom line is that you woudl not consider termination. So that's the 'big questions' answered really.

If I were you now I would look at ways you can manage the birth process. It is a real shame you have to have a GA - is this absolutely definite? See if you can speak through with consultants about the process, IF there is a big problem at birth. Kind of a birth plan for that eventuality. How long will you be out, when you come round who do you want to see and what do you want them to say, if baby is unwell what will happen immediately on birth while you are still in theatre, etc. If you know what the plan will be, will that make you feel a bit calmer?

Normal odds really vary. i was given 1- 150,000 with dd1, and 1-165 with dd2. Try not to focus on the huge gulf between the odds you saw and your own. Your baby might be fine, or might have some issues that can be helped. I have known children with Downs having great, happy lives, which is all anyone wants for their children, whatever issues they have to face.
I also knew a small child with a different genetic abnormality, and she was one of the loveliest little children I have ever met.

Try and look after yourself, it is often easier to deal with things once you have all the facts, it is very hard to be in your position, not knowing yet how things will pan out.

Regarding your little girl, several family members have had cataracts operated on with great success.

Do you have supportive people around you ? Because you have an awful lot on your plate. Get help with practical things if you can.

I really feel for you, OP. Sounds like you've got a lot on your plate. I didn't have testing for similar reasons to you, but at 34 weeks it was picked up that DS had a condition which was often present in babies with chromosomal abnormalities. They offered me an amnio at that point and I had it because I wanted to be prepared. At that point the risk is of early labour, not miscarriage. I don't know if you could still have the amnio just to ease your anxiety and so you can prepare yourself, but it might be worth considering.

Of course you are not being irrational, you have an enormous worry that you have no control over. I cannot imagine any woman being calm and relaxed at this point in a pregnancy with such an unknown hanging over them.

As mentioned earlier, if the nuchal measurement is the only indicator you have and that has decreased during the pregnancy that is a positive sign.

You made the informed decision to wait and see and that decision is still valid and still stands. I imagine getting so close to finding out the reality is incredibly tough. There are so many unknowns.

I have a chromosome disorder and was told all my pregnancies would be 'incompatible with life' I was told this after tests following my 6th miscarriage which were not ready until I was 5 months pregnant.

I now have 3 healthy children.

I also have a profoundly disabled nephew who seemed a totally healthy baby with no pregnancy or birth worries.
All of the children bring great joy and their fair share of worries!

I imagine you made the decision that whatever the health issues arose you would love and cherish your baby and be the best mum that you can be. Your little one may have no additional needs or lots of additional needs, worrying wont change that.

I think all you can do is enjoy the last part of your pregnancy. Know that your baby is safe and loved and cope however you can when you know for sure if there is anything to worry about.

I hope your daughter's op goes well. I hope your birth is straightforward.

I work with children with special needs and life limiting conditions. If you need me please message. I can pass on any information or support group info is you should need them.
Just keep me in mind incase you need a plan B.

But hopefully, it will be plan A all the way and you won't need to know anything extra for your little one.

OP I also chose not to have any other tests, when I had the 1-165 odds. I chatted with my consultant about amnio, as I was also an older mother, but when i found out the miscarriage risk I chose not to go for amnio as I would not have ended the pregnancy. I had wondered if it would help to find out, but I didn’t want to risk losing my baby, so no, I don’t think it is a stupid choice to make. One of my friends had no testing at all for the same reason.

Hi Op
Firstly massive hugs to you for having the courage to share your worries.
I am in a similar situation to you as I am 37 weeks pregnant and will be delivering at 38 weeks a baby with a structural defect and a 1in 4 risk of a chromosomal abnormality.
I completely understand your reluctance to have an amino or the Nipt test. We haven’t as the results would not change our desire to continue with the pregnancy.

I too have received a lack of support and understanding from friends and family who just want us to find out what we are dealing with.
However we are at peace with our decision.
We already have a child with Down’s Syndrome and we were offered a termination up until the very last few days of this pregnancy. This was very upsetting as we were vehemently opposed to termination. Our child is a joy and we have never regretted our decision.
If you are certain you want your baby please don’t contact Arc as they are a termination charity.
You will be in my thoughts and prayers in this difficult time.
Please feel free to pm to talk further.

We went through this 18 years ago.
I can relate to your post so much even after all these years
On a slight tangent if you want some information about support regarding your daughter and her cataracts pm me and I can give you some information that might be helpful.
We had an exceptionally stressful pregnancy and birth as I never shook off the fear and anxiety
DS was absolutely fine and I wish I’d just been a bit kinder to myself through the whole thing

I haven’t got much to add as I haven’t been in your situation, I didn’t have any of the testing when I was pregnant (it was only offered with my 2nd pregnancy), I knew I could not terminate so I didn’t see the point. Both my dd’s have disabilities, ones that could not have been detected anyway. You have been given 1 in 5 chance of having chromosome disorder but there’s also a 4 out of 5 chance that your child will not have a chromosome disorder. I hope all goes well with your delivery xx

Thank you for such lovely posts. I think im just at a point where it feels too much emotionally, not helped by me being the only one that seems to be dealing with it. He's convinced things will be fine, and very much the same, there's no point in spending the whole pregnancy worrying which I can appreciate is rational, but it feels like because he is dealing with it in that way, I don't have the support I need because I have to bottle it all up so I don't burst his little bubble. He's not really one for facing things so I have to pretty much deal with it all by myself.

I can't really do anything other than a GA, due to injury to my spinal cord. So we have been through that with the anaesthetist already. So waking up is definitely a big part of it.

My daughters cataract appointment is next week so before the birth, but we have to face up to the fact she has not tested any improvement in her vision yet and she needs them operating on as soon as possible so we were talking last time about making that choice this time and listing her in. I don't want to leave it any later as it's apparently different to adults having cataract surgery and more invasive, she starts school in September and I obviously want to get her past this and support her through it but at the same time I just don't want to put her through it.

I know I could have had the testing and I don't regret not having it. I just think the last few weeks in the circs and the choice I've made are getting to the point of distressing now and I just want somebody to tell me my baby is fine. I know realistically I'm only 2 weeks away from that but I just feel so scared.
I know that the chances are it will probably all be fine, it's just not making me feel any better. My mood has really changed the last day or two to the point where I just feel emotional and I'm looking at everybody around me who is just completely not bothered and unconcerned and just wishing I felt like that or I could swap places which sounds really childish.

Sil was making comments the other day about how her mum won't be able to watch her grandchild being born and she's not having one for years so she won't get the chance for years to see her grandchild born. Inside I'm just sat thinking are you for real? I won't even get to see my baby born myself and I've got enough to be dealing with in those first moments than worrying about people who haven't even said anything to us the whole nine months other than "I'd have had the amino"

I think I'm just at a point of exhaustion and emotional mess.

Wtf was your SIL thinking? I had a c section under general anaesthetic and not even my DH was allowed in the room! And do most MILs watch their DIL give birth? I’d have thought that was in the extremely unusual category.

I think it’s natural to get more worried closer to the birth. I did (IUGR and borderline triple test).

@ChariotsofFish she has form for being that selfish. Nobody bats an eyelid.

My only regret was not being a bit kinder to myself. I worried so much through my pregnancy I hardly enjoyed it and I can't remember the nice bits. Trying for a sibling now and if we are ever lucky enough to conceive again I hope I'll relax more next time. Lots of luck to you OP. Don't be afraid to ask for late testing if it would set your mind at rest.

You are not irrational.

All you want is for someone to tell you that everything will be fine but people telling you that it will be fine makes you feel irrational because you're so worried. It's entirely understandable to be in that quandary!

Can you talk some more to a midwife or consultant about the immediate care once the baby is born? So that whilst you won't be awake you do know what will happen?

Counselling could be a very good shout too - not only to help cope just in case but also to process what you've been through.

And stuff your SIL for being so insensitive. Childbirth isn't a spectator sport.

I hope everything goes well with your daughter's cataract surgery and that your next few weeks of pregnancy go smoothly and that all is well with the baby. X

I don't think I want late testing.
I don't think my partner has the balls to ever mention to sil that my needs for my birth come first and tell her to back off and give us the space we need to deal with it. It's not going to happen. He cares more about not upsetting her feelings than mine.
I do think I need to get some counselling because it's a lot to process alone.
Every time I get to the point of thinking about the birth it's like I can't get attached to the image of it all being ok. But then as soon as I think about other possibilities (specifically the not compatible with life option) I just break down

Do you have someone who can be an additional birth partner? Obviously not who can be in the room with you for the c-section, but someone who you can talk to now about your fears, worst-case scenario, etc. You might feel better (relatively, this is an awful thing) if you have a plan – or multiple plans. Plan A, Plan B, Plan C, for different outcomes for your baby. Even hiring a doula to be that person could be an option.

Have you had a GA for a CS before? Ie do you know how groggy/out of it/sick/able to process information you feel? I would think about how and when you'd like to be told good or bad news, who you want there, make sure staff know (if this is what you want) oblivious SIL can't push her way onto the ward to make it about her whatever the outcome, if you'd like to be the one to dress your baby if it's a worse-case scenario, etc.

Write it all down in a birth plan. Your DH can have his head in the sand to the very last minute but he will have your wishes on paper, you can give these to the midwives too.