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Due soon- lethal condition- CV- so upset :(

(12 Posts)
MisssC3025 Thu 26-Mar-20 23:04:02

Hi all

I just need to let this out and it helps to type it to anyone who's about and listening... I'm utterly distraught and don't know how to deal with this...

Just *to put it out there I am aware it's incredibly tough for so many of us around the world and we will all have our stresses and worries, but I do hope we all come out of this well and supported 🙏

... the start of this year has been awful 20 week scan showed baby boy has a lethal form of skeletal dysplasia and drs say he hasn't got a chance to survive. We decided to continue pregnancy to see our little man and have the whole family with us for as long as he may live. No matter how short. I now have 9weeks left until I'm due and I can't help but sob every day. I doubt I can have my mum there when I give birth. I'm afraid my DP may not be able to be there. My family definitely won't be able to see him and say goodbye. I'm worried about catching CV (I am staying home for the foreseeable) but still worried I may catch it or DP may catch it when he's next due a food shop! I miss my parents who have been my rock through all this (thank goodness for FaceTime).

I have so many questions about birth (first baby) and the plan that needs to be put in place for my baby but all my appointments have been cancelled so far...

I just can't believe this is happening and in June my world will continue to shatter at the loss of my little boy... 💔

I'm just having a tough day and hearing the news of so many people dying it's just horrendously sad ☹️

I know I can't do anything about it, but the only thing which would have been keeping me going would have been the thought of bringing my little boy home... but it's looking very unlikely 😭

Anyone else in a similar situation?

Lots of love all. Stay safe. Stay home 😘

TerribleCustomerCervix Thu 26-Mar-20 23:14:34

Oh OP flowers

What a shit, unfair series of events.

Are you consultant led at the moment? Do you have a point of contact? There should be contact info in your green folder for your team. If you give them a ring and ask to speak to someone, whether that’s a senior midwife or consultant, about your situation. I had a friend who had slipped through the net with regards to her appointments etc, did the same thing and got speaking to the sister of midwives who was furious about how she’d been left without information and got her sorted out.

I don’t know if you have Instagram, but there’s an account called PrayersforPaisley, a little girl who was born at the end of last year with the same condition as your son. They’re an American family but they give a good idea of what it was like when she was born and the care she needed. It might help to have a quick look when you’re ready.

Krazynights34 Thu 26-Mar-20 23:21:39

Hi,

I think I responded to an earlier post of yours? I told you about my daughter who was going to get her walking frame (it didn’t work out, she is too tall)..?

I’m really feeling this for you. It’s horrendous.
Is there any way you can ask the hospital if you can have your DP there regardless?

When my daughter was whisked off for a CT scan not long after birth and I was crying my eyes out because it reminded me of my first baby in a coffin a wonderful woman appeared, took me aside and then made sure that I got skin to skin contact with her. (They were expecting her to die).
They made exceptions is what I mean.

Would you care if it were just you and your DP alone with him?
I know it’s not what you wanted (given that none of this is what you wanted)...I’d hope you’d be given that much by the hospital. He could be in scrubs etc? UCLH allowed my DH into the theatre before I went under GA to have my daughter given what I’d had to endure and not knowing whether she’d live or not.

I will think of you every day. Please let us know if there’s anything we can suggest.

I will say there’s little one can do to stop the virus I think (I say this because I think I have it in mild form and I haven’t been outside for ages ). Is there a way to stop thinking about the virus? Maybe just don’t watch the news, listen to music, watch comedies (this is what I did). Keep hand washing etc but try not to think about it.

BecauseReasons Thu 26-Mar-20 23:25:12

I remember your earlier thread. Try not to worry too much about it now, a lot can change in 9 weeks. It may be all over by then. Plus, exceptions can be made in exceptional circumstances, which yours is. Can you ask if they'll do a telephone consult?

MisssC3025 Thu 26-Mar-20 23:39:10

@TerribleCustomerCervix hello and thanks for posting. As soon as you mentioned that insta account I had to check it out and follow! What an amazing miracle it really put a huge smile of my face! I pray for time like this with our boy 🙏 so thank you.

I do have contact details yes. My current MW has been pretty crap to be honest, so I may ask to speak to a senior midwife for sure and ask for help and go from there. The consultant is the person who cancelled my 30wk scan and I understand it's to keep me safe at home, but I'm just confused given new hosp guidelines of what's going to happen.

Let's just hope in 9weeks it'll be okay 🙏

MisssC3025 Thu 26-Mar-20 23:46:13

Yes hello again @Krazynights34. Hope you're well. Yes I made another post.

I'm sorry to hear the walking frame didn't work. What's the plan now then for her?

At the moment my hospital is saying one birthing partner allowed (I'm just torturing myself and worrying that it may change to no birthing partners as apparently some hospitals are saying this) I don't help myself. My mind likes to play tricks on me. Just praying each day it stays that way!

Hopefully they will make exceptions. I definitely need to contact someone high up for support.

I agree about not watching the news. I try my hardest throughout the day. I've been working on mind puzzles, card games, drawing and lying in the garden relaxing, but then I stupidly want to know updates! It's hard to get away from it. My DPs been great this evening he made dinner and then got some board games out for us to play. I must admit my mind was occupied on winning as I'm very competitive and then he popped some music on and we goofed about dancing in the kitchen. Very lucky to have someone like him 🙏 but your mind is an awful thing... I just start thinking about it all when I'm alone for even 2mins! However, I'll try my best!

Thank you! Lots of love x

Confuddledtown Fri 27-Mar-20 00:41:00

My first daughter was born sleeping and it was the hardest thing I've ever gone through, and that was without knowing it was coming, and it happening in the middle of a pandemic with no support. I'm sorry I've no advice for you, but I didnt want to read and run. I'll be sending you my thoughts and prayers, and wish you all the strength in the world to get through these next few months flowers

Emberfoot Fri 27-Mar-20 01:18:38

I responded to your last post about this, I was the person who's baby has serious heart defects and may also die shortly after birth. Just to say I am still thinking of you and really not looking forward to going through this either. Hoping to goodness hubs will be allowed in by the time we are due. Lots of love for you and family x

MisssC3025 Sat 28-Mar-20 13:52:29

Hi @Confuddledtown I'm so sorry to hear about your little DD. That's heartbreaking! When did this happen if you don't mind me asking? What happened that caused this 💔 I hope you're okay.
Thanks for your kind words 🙏🙏

Stay safe x

MisssC3025 Sat 28-Mar-20 13:54:07

@Emberfoot hi! Yes I remember you from other post! I pray for us both! I hope you're keeping busy to get your mind off of everything? How are you doing during this time?
Pray that our DP/DHs can be with us 🙏🙏🙏 when's your due date again?

Stay safe xx

TerribleCustomerCervix Sun 29-Mar-20 12:30:08

How are you getting on OP?

Did you manage to get chatting to a midwife or consultant? Xx

TwinkleStars15 Sun 29-Mar-20 17:17:12

@MisssC3025 I’d be very very surprised if they didn’t let DP be with you. A midwife friend of mine says that no one is expected to give birth alone and that they won’t be stopping partners from being at any birth, so fingers crossed this doesn’t change (she doesn’t think it will change).
You may also go overdue by up to 2 weeks as it’s your first, and any extra time will help with the virus situation.
So sorry for what you are going through, and it absolutely sucks that you’re feeling alone and let down by services. Could you find out the contact details for the senior midwife? At my local hospital she’s called the ‘supervisor of midwives’ and I saw her during my last pregnancy and she was really helpful. We spoke a lot about what type of birth I wanted and how that would work etc and she wrote me out a birth plan and emailed it to me. Worth a try maybe?

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