Need to have a massive RAGE!

[Nessalina]

I am just so fucking fed up right now.

You may have seen my previous posts, but 10 days ago we went for our twelve week scan and found that our baby has severe hydrops. The fluid in its chest and under its skin almost certainly (80% chance) means Downs or another chromosome disorder. Consultant has only given us a 5% chance that the baby will not have a condition and be born perfectly perfect.

We're currently waiting for CVS which we can't have til the placenta gets bigger because where it's placed currently the test would be much more risky than usual.

But now I'm nearly 14 weeks and getting a little bump and feeling fucking massive, and we still can't tell anyone I'm pregnant!! I just want to post a massive Facebook moan but obviously I can't!

I sort of feel like I'm no longer pregnant even though I am IYSWIM? It's just driving me mad and I want to know what the heck is going on with the little mite in my tummy

Sorry for the moan. It's just shit.

I didn't want to leave your post unanswered.

You've every right to moan...

Scream, shout, swear- anything you want to do, do it!

I contacted the charity, AIMS with a previous pregnancy. They were very helpful. Do you have RL support? Someone to off load to?

Take care of yourself & I really hope everything works out for you.

X

How long do you have to wait for the CVS to be doable? If it's more than a couple of weeks and you can find the cash I'd be tempted to go for a Harmony test.

Hang in there x x

Has the consultant explained fully about hydrops? Talk to ARC, excellent charity, they will help you think clearly and support you with your choices. Good luck OP.

Gosh this is so hard isn't it? We also were told we were high risk for Downs at the first scan, at the time we weren't unprepared as DH's uncle had Downs (yes now I now it's not genetic as such) and at the time we were too late for the nuchal test. In the 10 days we had to wait for the CVS test to be available we researched and considered our options. We actually decided that we'd go ahead anyway. So no further testing, although I could totally understand why someone else might want to know for sure.

As it turned out DD did not have Downsfor which I am hugely grateful but, I really think I would have loved her this much anyway.

It's awful to have to wait but do perhaps mentally explore those scenarios : of she/he does or does not, what will you choose to do? There is no right or wrong,, just what is right for you as a couple/family.

Sending you hugs and strength!

We're back in today to see if CVS is doable. Consultant said it could be 3 weeks before it is, but we don't have the ready cash for Harmony. There's also a good chance that if it's not a chromosome thing that it's a genetic thing, which I don't know if harmony tells you? Not sure as haven't looked in to it, but think we'll be sticking with the dear old NHS.
Truffle, I know what you mean, but we know we need to have the test because it's not just risk of Downs but also Edwards which has pretty much zero life expectancy. I know I can't carry a baby to term and then lose it, I think it'd break me for a good while, so we need to know what it is so we can take a decision now.
The rotten thing is that the hydrops is so bad that the baby is at constant risk of giving up the ghost because of organ pressure, so I'm constantly overanalysing and worrying if it's still ok.
The best case scenario is that the fluid is caused by a minor defect, like a lung or liver abnormality, that can be dealt with. If it's not a chromosome thing, then it's most likely a heart defect, which could be severe or not, time will tell.
Ugh. I just need to stop obsessing about the possibilities and wait and see!!! Damn hard though.

I am at least relieved you understand what you dealing with, it has to be heard face to face from an expert and you have had that awful conversation. I worried that this would turn into a Down's thread when that is not the issue for you. I wish you lots of strength and you are right to have continuous NHS care with a consultant that has the whole picture. There's nothing I can think of to say that will help really but try to look after yourself, with rest and diet and although you say you can't tell anyone yet maybe there is a close friend or family member that can be told so they can be there for you as you sit and wait and deal with this. I am repeating myself, sorry, but do contact ARC (antenatal results and choices) they will help you.

Thinking of you, hope the placenta is in a better position to have the cvs. Once it goes ahead you have a whole new type of worry to stress over. I hope everything goes well

My sister went through a situation like this with her first baby. Unfortunately it wasn't a good outcome but ARC were extremely helpful when she needed them. She did do the harmony test with her next pregnancy for peace of mind and she really recommends the fetal medicine centre in London. Their prices are cheaper than most others as they are working on a not for profit basis. Definitely worth considering. Their scans are also a lot better than the NHS ones. Ultimately it was seeing Professor Nikolidi that made up her mind that she had to make the decision to terminate as although there was no clear name for the problem her baby had she was told it was unlikely to make it to term and if it did it wouldn't be for long. All the other people my sister saw didn't really ever commit themselves to saying something like that and left her feeling as if she had to make choices with not enough information for which she would have felt so guilty. If you find yourself going down the road where you don't have enough info to make decisions then I would recommend a trip to see the professor.

I hope this is something minor. I know how tough it is.

Well we were able to have the CVS today thank goodness, so feeling better that things are moving, though it was a very uncomfortable experience!
Just two days before we get a first idea of what's up...
Really good to see the little thing still hanging in there. Fluid still very bad, and a lot in and around the lungs, but strong heartbeat and growing well. It's not much, but it's something!

Thanks for the info about ARC Rosh, I've had a little look at their website. I'm lucky that I have lovely supportive husband, parents, and best friends who are taking my real life tears and rage, but it's great to have MN for additional venting