Feeling very low :(

[MisssC3025]

Hi all.
Just suffering quite a bit during this pregnancy would love some support and others to talk to.
Cut long story short... up til 20week preg everything was going fine (had a kidney infection at 8weeks) but other than that just mild nausea.
At 20wk told baby has a lethal form of skeletal dysphasia. Have had amnio test and been referred to two specialist hosps all have confirmed a lethal form of SD. Don't know the exact type until baby is born.
To add to all this I have polyhydramnios (too much amniotic fluid) so I'm constantly rock hard and uncomfortable (currently 25weeks) I look huge.
Just come back from delivery suite as had back pain and I have a UTI.
In addition, waiting on results from another urine test for possible gestational diabetes.
I'm so low. Sad at the thought of my baby not surviving birth. (Termination was mentioned but DP and I don't want this). These next three months were supposed to be a happy exciting time but everything has been turned upside for us.

Really worried about polyhydramnios but no ones really said much about it 🤦🏻‍♀️

Op did you get your GD results back? Sorry I didn't see notification of your response. Regarding the high fluid mine has been higher 3 times but only by a few mm. Apparently they used to allow up to 10cm but 8cm is now the cut off. It should be in your notes what yours is measuring at. How you feeling? X

@loveacupoftea18 @BecauseReasons thank you for writing back and for the questions you've both suggested. I have added this into my question list! Let's just hope most can be answered as this is just torture!

And yes we're thinking the worse and just hoping for the best. It's so hard 😢 but thank you for your help xxx

@Jesskir89
Hi!
I went for another urine test and it came back all clear so GD is currently not a concern 🙏

Regarding the fluid.. I can't see anywhere in my notes how much fluid I have?!? Only see baby's measurements and the fact that I have "polyhydramnios" but no numbers as far as I can see!

The last week or so I haven't felt as tight, only when I eat a little too much. If I eat little but often I don't feel as tight! So hopefully that's a good sign 🤷🏻‍♀️

Xx

So sorry to read this. What a truly awful time. I’ve no advice but wanted to give a hand hold and say I think you’re incredibly brave and amazing xx

you're so brave OP. My heart goes out to you - I loved reading about Baby Lucas kicking when you read about the wriggly worm! I have nothing helpful to say except lots of sympathy

Op good news on the GD front, 1 less thing to worry about. I was told if the fluid was too high they can reduce it so hopefully it's not worryingly high. Try and relax about everything else now, good luck for today please let us know how you get on x

@hjbows88 thank you 💙

@Umberta thanks for this ☺️ means a lot

@Jesskir89 I know thank goodness 🤞🏼 and thank you I will keep you posted. I'm so nervous as we haven't been to see consultants in over two weeks, so having to bring it all back is going to be torture, but we need answers! 🙏🙏

Hope you're well xx

You do need answers and are bound to be nervous sweet. You can't possibly get any more bad news so I'm praying something positive comes from today for you all x

So just a frustrating update 😔

We are not very much further along. Got so angry because we repeated the same stuff to them as last time. I said I’ve already said we want to continue with this pregnancy why are we repeating the same stuff! What are you going to do to support me? How and where am I going to give birth? And what are you going to do in terms in intervention for me and my baby?

Why am I repeating myself? So they’re going to book in an appt with paediatricians at my local who will discuss and speak to Specialist hosp. Apparantly if specialist think there’s no chance for him then I’ll have to give birth at my local.

I then asked to speak to the midwife privately (who was lovely) and I said I don’t agree with that!! I want to be in the best specialist care whether you think he will make it or not! I don’t want anyone giving up on him! She understood and is going to feed this back to the paediatricians and then they will decide what the best options are for us!

It’s just so stressful!!!! They’re adamanent he won’t survive at all! They said 0%!

I said regardless of the % we want to have at least 10seconds with him! I Don’t want them to give up on him!!

😢😢 I understand they have to be factual and honest. I really do, but why can't it be certain that we can't go to a specialist hosp? Why did the consultant say they may refuse us if they think there's no chance. I'm just so confused 😢😢

Op I'm so sorry to hear this. I don't understand why they're not doing all they can. Surely there's some positive stories out there where babies have defied the odds? There's always a chance of that happening. Are you in England? If so are you north or south if you don't mind me asking?

I don't get it either. Why am I being sent back and forth. It's so stressful. Do they think I enjoy hospital appts like this whilst I'm sat in the waiting area whilst everyone else is getting their scans and smiling and laughing. It's difficult.

I've read positive stories but I'm trying not to get my hopes up. We're East Anglia.

Xx

I don't get it either. Why am I being sent back and forth. It's so stressful. Do they think I enjoy hospital appts like this whilst I'm sat in the waiting area whilst everyone else is getting their scans and smiling and laughing. It's difficult.

I've read positive stories but I'm trying not to get my hopes up. We're East Anglia.

Xx

Oh hunny I feel so much for you reading this, I was selfishly feeling bad because we may well "only" get 2-3 days with ours, with a super slim chance of surgery, I really hate to imagine how you are doing. I'd maybe try asking again about counselling, we have been referred to a midwife who does it before a loss, but we live in the South. However it turns out, know one more couple are thinking of you 💔

I would see about a referral to a specialist in Birmingham I've heard they can work wonders there. I understand you don't want to get your hopes up but you also want a chance xx @emberfoot I'm so sorry to ready what you're going through too. I think you're all such brave people x

That is very frustrating. Hope the specialist is more informative.

I've been googling:

emedicine.medscape.com/article/943343-treatment#d5

Administer neonatal resuscitation and ventilatory support. Most infants with lethal skeletal dysplasias are stillborn or die within hours of birth. Given respiratory support, some infants with severe respiratory distress (eg, asphyxiating thoracic dysplasia) may survive.

Apparently the chances of survival vary with the specific type of lethal skeletal dysplasia, and as they don't know the type yet, I'd argue that the presumption could be that your baby may survive given appropriate support.

@Emberfoot gosh you're so brave! I'm sorry you're going though this too! I really hope you get your 2-3days with baby but I wish and pray you get many more days 🙏🙏🙏 when are you due? What does baby have if you don't mind me asking. I hope you're okay. PM anytime 💙💖

I'll definitely ask about counselling again as they keep referring to ARC (which is fine) but over the phone I'm then left to hang up and be home alone getting anxiety over it again. Speaking to people f2f suits me better. Well I think anyway.

Thanks for posting keep in touch 🙏🤞🏼

@Jesskir89 thank you I'll look into this for sure as that's not miles away from me at all thank you!!! 💙💙

@BecauseReasons oh you're a star. How lovely of you to do some research for us. See this is why I am so upset, because it sounds like they're already giving up when they don't even know what it is 💔

Thank you so much for this! I'm going to show them this!!

Lots of love x x

Aww ty, baba isn't as bad as yours, but he will have a couple of heart defects (Unbalanced AVSD) where the sides of the heart don't have walls, and the left side that is supposed to pump to the body is almost non existent. He also has a good chance of
Down's syndrome, but rn that's not rly a worry. They won't know until birth (being induced mid June) if the heart is operable, so all fingers and toes crossed until then. Sending love to you too tho, hubs was also sad to hear about your bubba 💔

Oh @Emberfoot I really hope you're baby will be fine and he will receive everything to make sure he survives! It's just such a sad and worrying time! I hope you have a lot of support to get you through the next few months! I'm June too! 1st June in fact! Are you going full term and giving birth at your local? Thank your hubs and lots of love to him too during this time 💙💙

Praying for our little boys 🙏🙏💙💙

@Emberfoot just seen your said you were being induced sorry missed that bit! I wish you all the luck! Is this your first? Xx

Yea it's my first child, going to be born in an unfamiliar hospital 35miles from home for good measure lol. On the plus side I am assured they are real specialists for babas conditions, so if anyone can repair his lil heart they can. Just praying I make it to nearly full term to give him the best poss chance. How about yours, have they settled on a hospital yet?

Oh really which hospital?? I really hope they can help him too! I really do.
What's the plan if you go early into labour? Would you have to go to your local? Travelling 35miles in labour may be frightening!

He's my first too 💙 they haven't settled on a hosp yet. Hopefully I will have an appt arranged soon with paediatricians 🙏🙏