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 I can offer no advice on the conditions mentioned as I haven’t suffered that kind of heartbreaking news myself.

Just wanted to let you know that I admire your strength and courage. I hope the medical staff can make the rest of your pregnancy as pain-free as possible. You and your partner are allowed to feel low when receiving news like this. I wish you both all the best

@fibeee hello thanks for your post. Really appreciate your kind words.💖💖

I’m so sorry you’re going through this What a rough ride! I cannot offer any knowledgable advice I’m afraid.

Can you ask your midwife to point you in the direction of more information?

@puds11 hi and thanks for posting.
I have been to see a consultant who's getting a lot more info from the London hosp to give us the best options for the next three months e.g. best place to give birth and what interventions may need to be put in place for baby 🙏💙

We're hoping to hear back next week for an appt. I have so many questions to ask my notes on my phone are endless!

Xx

Making notes is an excellent idea as it’s easy to forget important things when it comes to it. Hopefully they will be able to provide you with the support you need throughout. Have you thought about or been offered a counselling service? It may be worth starting now in order to help process all the information and the inevitable highs and lows.

@puds11 I have ARC number to call if I need to, which I have done twice now. They've been very helpful. I did ask if there was face to face counselling I could attend, but apparently there isn't any counselling the hospital can refer me to during this time. Only available if you lose a child/after child birth. Which I found a little odd. My DP and I are currently in such a state of shock that all we want is facts/answers... so counselling might be a little difficult for us atm, because we just want answers. Mind set atm I guess 🤦🏻‍♀️

Bumping incase anyone's awake.

Few days I've felt a little myself. Cracked on with day to day chores and spent a few days seeing friends and family.

It's when I close the door and head to bed a wave of emotion and fear hits me. I pray/hope my little boy will pull through... but part of my mind is saying "he's going to suffer/die isn't he?"

I just don't know what to do anymore 😢

I want it all to be a nightmare.

His kicks are amazing and he's so safe inside. I don't want to ever let him go 😢

Hi @MisssC3025,

I have no advice but couldn’t read and run. Just know that we’re all thinking of you and sending positive thoughts your way, I can’t even begin to imagine what you’re going through. Keep talking, bottling things up won’t help.

Have you had anymore answers or info since your last posts?

Xx

Hi @SkyBlue20 thanks for dropping by. Appreciate it so much as feel so alone!

Nothing yet. Have an appt next week to discuss next steps (I guess where would be best to deliver baby, when and types of interventions) well I hope that's what we will discuss! Other than that still in limbo. I wish I could cast a spell and make it all go away 😢😢 my partner and I would give this baby the world... why has this happened 😢😢

Op what level was your fluid? I've been told twice mines high but not enough so to worry. Also did the GD Test come back? I've got gestational diabetes but not done through a urine test but a glucose tolerance test. I'm only asking these to see if I can offer advice in these areas. I'm sorry to hear about the SD and think you and DP are being so brave so good on yous. I hope everything works out well for the 3 of you, sending best wishes x

Hi lovely,
I'm sorry to hear you're going through such a tough pregnancy, it must be so hard for you and your dp. I cannot offer you much advice I'm afraid although I did have gestational diabetes in my pregnancy.
Gestational diabetes is nothing to worry about and can mostly be controlled through diet. I just cut out the sugar, and limited the carbs and my blood sugar levels were fine. Don't worry if you do get it as you will be able to work through it.

Hope I have helped just a little. Sending you prayers and strength during this tough time.

@Jesskir89 hi. I haven't been told my actual fluid level. One specialist said mild, then my MW said doesn't seem like you have a lot. Then a doctor at triage (when I went in for reduced movement last week) said it feels like a lot! So I'm completely confused 😑

My first urine test came back high glucose, but have had more since going in for reduced movement and they came back clear on the glucose front! So I'm going back to MW this Friday and she's going to check again. If it comes up high again I'll be sent for glucose tolerance test.

Hope all is okay for you with GD! And thank you 💙💙💙

@salinali thanks for your kind words. Thanks for reassurance on GD! Let's hope it doesn't come back high for me this Friday when MW checks urine! But if so I'll take your advice, which is hard as I have such a sweet tooth and carbs is my middle name 🤦🏻‍♀️🤦🏻‍♀️

Thanks so much for your prayers 💙💙

Hi, OP, so sorry to hear your news. I'm sure you've probably found and read this, but there's a charity on the bottom of this document which should offer support throughout the process:

www.gov.uk/government/publications/lethal-skeletal-dysplasia-description-in-brief

There's also a restricted growth charity on the bottom of this one:

<a class="break-all" href="https://www.google.com/url?sa=t&source=web&rct=j&url=assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/402279/lethal_skeletal_dysplasia_Health_Final.pdf&ved=2ahUKEwj96fus7u3nAhX_QEEAHRcwCRMQFjALegQIBRAI&usg=AOvVaw2OjfKDisGB3xzYBDWE1j7h" rel="nofollow" target="_blank">www.google.com/url?sa=t&source=web&rct=j&url=assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/402279/lethal_skeletal_dysplasia_Health_Final.pdf&ved=2ahUKEwj96fus7u3nAhX_QEEAHRcwCRMQFjALegQIBRAI&usg=AOvVaw2OjfKDisGB3xzYBDWE1j7h

It must be so difficult. With it being a genetic mutation that causes it, this specific baby was always going to have the condition. Nothing anyone did caused it. I'm afraid it's just one of those things, but must be so very hard. You're very brave.

I'd say prepare for the worst, so that you already know what will need to be done if that happens. I hope you get good support from the NHS, friends and family. Do keep us updated if it helps, I hope everything turns out better than expected.

You don't ever have to let him go OP. Whatever happens, he will have existed on this earth, in your arms, in your heart and in many peoples hearts. The not knowing must be horrendous for you but try to hold on to the thought that you will hold him soon. You're a mum and will have a child, no matter what happens. I really hope the best for you and your little one ♥️

@BecauseReasons thank you very much for your links. I came across the green pdf but haven't seen the blue one before. Plus didn't realise many charities were on the last page! 👍 really appreciate this!

We're preparing for the worst and hoping for the best 💙 just time will tell.

Thanks again x

@YappityYapYap hi lovely thanks so much that was a nice post to read. 💙 I can't thank you enough 💙

You're welcome. I feel for you, this must be hard. Have you been thinking about any names for your little one? I know that you may want to be reserved incase the worst happens but there's things you can think about that take place in every pregnancy like a name or thinking of a few names, picking an outfit to put him in after the birth and talking about whether he'll be born with dark hair, how much you think he'll weigh etc. These are all things you can think about to try and bring a bit of normality to your pregnancy. I think you're so brave and I don't know what it's like to be in your shoes but if I was, I would make the same choice you have, I think I could cope better with knowing I could hold my baby. Some people know themselves and know that they could not cope with the rest of the pregnancy and knowing there might not be a good outcome and I understand why they make different decisions also

We have yes ☺️💙 We did a private scan at 17weeks to find out gender as we revealed this to family and friends on Christmas Day. So we already had a name for him (which is Lucas) for three weeks before we found out the awful news. I continue with my pregnancy by talking to him, singing and reading to him (I read out titles of different baby stories and wait for a kick from him spookily he kicks at the same story each time, so I always read that one about a wriggly worm turning into a butterfly 😊) I get excited when he kicks like mad too and get others to feel him. It's just very emotional each time and for my family and friends too when they feel his kicks. DP and I think he has dark brown hair (as we are both dark) I picture him with bright blue eyes (as DP has bright blue eyes mine are very light hazel) I imagine his skin to be olive toned as we are both mixture of Mediterranean and South Atlantic. His latest scan picture is gorgeous you can see the beautiful outline of his face... he has a nose I can't wait to pinch! It's really helped writing this so thanks so much for asking 💙💙

I just hope we get to spend some time with him whilst his beautiful eyes are open. We want him to hear us say "we love you". I know he can hear us whilst he's warm and cosy inside, but we just want that moment to say it when he's in this world. I really hope we get that opportunity! 💙🙏💙

@MisssC3025 I'm keeping everything crossed that Lucas defies the odds and that you and your partner get to spend some quality time with your precious little boy! Sounds like you will make wonderful parents and Lucas is lucky to have you 💙 x

Thanks so much @FTM2020 that's so nice to hear 💙☺️

Have a nice day x

Morning all. If anyone is about and able to help with something I'd really appreciate it.

I have my consultation appt tomorrow to discuss next steps with continuing with a pregnancy, which could end fatally for baby 💔💔 (my first few posts explain in more detail) I am aware I may need to give birth at a specialist hosp as my local isn't. However, could any of you help on what types of questions I should be asking to ensure baby and I are supported as best as possible?

My brains so fried with emotions I keep getting a mind block.

Thank you 💙

Bumping ? ☺️

So sorry, I don't think I can provide any help... just wanted to let you know someone was here.

I suppose if it were me I'd perhaps ask what experience the hospital has with this type of condition, and the experience of the consultants? And maybe get them to walk you through what happens after you give birth etc? I'm sorry, I don't know much about your baby's condition but if the worst happens I imagine you'll want some keepsakes etc. I'm sure lots of places consider this?

No experience, sorry, but from what I've read, generally they focus on palliative care for babies born with this condition, so I'd ask what that entails, how much you'll be able to keep the baby skin to skin, when you're likely to be able to hold him after birth, if you'll need to have a C-section to minimise trauma to the baby and, if so, how you'll be supported to care for him afterwards, as sections can make it difficult to actively pick a baby up and you'll want to be holding him as much as possible. How will they support you to make memories with him in the event of a stillbirth or death shortly after birth- do they have cold cots available for use at any of the potential hospitals? Is there any scenario where they would try to save his life or is it purely just easing suffering? Is he likely to be able to feed?

I'd also ask about the 'almost always'. In the second document I linked to, it said that babies almost always die of this condition. So my question around that would be, 'When babies do survive, how does that happen?' I would try and avoid getting your hopes up though- the literature says that survival is very, very unlikely (the first document I linked to suggests it is impossible). I'm so sorry. I'd still ask the question though, if it were me, but be prepared to be told that it just can't happen.