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 🤦🏻‍♀️

We live nearish Chichester hospital, but giving birth at Southampton's Princess Anne. Plan is to be induced around week 39, but if I am early its a mad rush to Chichester, baby gets drugs to keep the hole in his heart open and stable, then we get an ambulance to Southampton ASAP. Its gonna be drama either way lol. GL with the paediatricians x

@Emberfoot wow that's crazy! Praying he doesn't come early !! Glad you have this all planned 🙏 did they recommend Southampton hosp or did you research and ask?

Thank you 🤞🏼 I hope they can help x

We were sent there by Chi to confirm their diagnosis of hypoplastic left heart syndrome, as Southampton have some great heart specialists. Unfortunately for us after a scan for nearly an hour at Soton they added atrioventricular septal defect to the menu, with a 1 in 2 or 3 chance of Downs or other chromosome issue. Still, at least they found it early so we can get extra scans, but if his last valve is leaky at birth they say that's pretty much it for him. Won't know till he is born tho. It feels selfish saying it, because it is best for him we know early, but I kinda wish I didn't know so I could spend the last few months of pregnancy worry free 😕

I had lots of UTI and kidney problems with my first and was advised termination as me and baby were struggling I was monitored every week on the heartbeat monitor. My daughter came at 34 weeks small but fine I was prepared for the worst so was very lucky. I was told I wouldn't be able to carry after and had 2 terminations over the past 5 years I'm now 35 weeks pregnant and healthy but being monitored very closely. I hope everything works out ok for you!

@Emberfoot I completely understand what you mean, just like us we have only been able to be happy since finding out to week 20! The rest, so far, has been full of worry, tears and the unknown. The very last thing we did for baby was the nursery the day before my 20wk scan. I guess we didn't think anything like this would happen. We won't have a baby shower, we're no longer buying anything. It's just too hard.

It sounds like your little man will be in the best possible hospital though, so that's great news!
For us it sounds as if this condition is so rare that there aren't many specialist 🤷🏻‍♀️🤷🏻‍♀️ all a waiting game until we have more appointments x

Oh gosh @Carlywalford94 ! You have been through a lot you poor thing! You're very brave though! Thanks for sharing your experience. I'm very glad you're first little one was okay in the end and I pray for this current pregnancy glad all is healthy 🙏🙏

Thank you I hope so too 🙏🤞🏼

Op thinking of you and DP, please keep us updated would love to hear some positive news soon x

Update:
Been waiting for a call regarding another appointment with other consultants, paediatricians and the neonatal team. Finally have an appt tomorrow at 2pm. Feeling so anxious, as we really want next steps. We both still feel in limbo. I tell myself I'd go in and explain exactly what we want, but once I go in I get all quiet and struggle to speak. Emotions take over I guess. Any advice would be amazing. Hopefully we will have an update by tomorrow eve 🙏🤞🏼

Make some notes and write down your questions so that you can refer back to them if you draw a blank.

Op this is yours, your baby and your DP life, don't be afraid to speak up and get the answers you desperately need. Stay strong, you've come this far. Good luck x

I can absolutely second making a list of any questions, we did the same and it really helped, you go in, get a piece of news or two and everything goes out of your mind till too late otherwise. Good luck with the appt ♥

@MisssC3025 so sorry to hear your having a tough time, I'm also 25 weeks and expecting a little boy I was told at 19 weeks my waters had broken they told me there wasn't enough fluid and that I should not continue with my pregnancy and all the horror storys this was on a Sunday I was booked in for a scan on the Wednesday I went back had a scan went to see doctors for them to say "oh we don't think your waters have broken" of course I was relieved but not happy with all the stress I was told I didn't have enough water that's why they believed my waters had broken yet when I went back there was enough not as much as they liked but they was fluid and any amount is better then known, also along the way of pregnancy I've had a lot of scares and I went in once to get movement checked and I broke down crying as I felt like I was constantly waiting for the next thing to go wrong I was offered to speak to someone as they said it could lead to depression later on so please ask your midwife or consultant as you clearly need to express your emotions with some professional I don't believe they can only offer this is some one loses a child just seem not right. As hard as it is try to remain positive your little boy will fight just like your fighting every day to keep going sending you love and strength

OP, I’ve just come across your thread.
I lost my first full term daughter to placental abrupt ion (previous MC) and almost died myself.
I gave up, got pregnant accidentally and had an early MC that required medical assistance.
Tried IVF, it failed.
Left my job and found out I was pregnant with my DD.
12 week scan, baby wasn’t moving but otherwise looked fine.
20 week scan, told baby was definitely in trouble (severe clubfoot, small stomach, high NT etc). They couldn’t say what it was.
I had loads of pressure to terminate.
At 27 weeks I was told the baby wasn’t going to be able to breathe and would die. I refused termination.
At 29 weeks I was told baby would never walk, be able to play etc.
She was born at 35 weeks by planned C-Section (she had to be: her legs were fixed in a lotus position).
She was breathing by herself the next morning. True, she almost died twice but that was doctors rushing her.
She came home after 3 months in hospital.
She can’t eat (yet). But she can play. She’s smart but can’t show it easily.she goes to nursery and loves it. She rocks out to music. She knows books off by heart.
She loves her life.
She’s going to get her first walker on Friday. I think she’ll walk.
She can play.
I used to regret having her, but she’s been the most wonderful discovery in my life.
I hope that all doesn’t sound callous. Your post has me weeping my eyes out.
I guess I just wanted to say, you are brave and a wonderful mum. And Lucas has a wonderful dad.
You’ve both done everything he could ask of you.

In terms of advice - ask for assistance from a palliative care team (I’m in East Anglia and my DD was born in UCLH and was transferred to Great Ormond St, supposedly for diagnosis but that was pointless).
The GOSH palliative care team were fantastic.
I cannot tell you how much I hope that things go well for you all (my definition of well is different from others I’m sure).
I will think of you every day.

Oh, and I wrote a letter to all medical staff. I said I don’t want to discuss termination. I want x, y and z for my birth.
Had it printed out and attached to the front of my pregnancy notes.
That stopped a log of nonsense

Lot not log

Oh OP what a hideous time you are going through. Prayers for you all
If they are insisting on giving birth at your local, consider that it might be because that is where the best support will be for you should the “inevitable” happen. You and Lucas are both patients and they will be trying to care for both of you. I know you want to put him first but if there is really nothing extra that a specialist hospital can provide, it’s NOT selfish to consider your needs too

Thank you @BecauseReasons @Jesskir89 and @Emberfoot 🙏 will update later x

@Goldenmother thank you for you post! Wow you've been through a lot ! Can't believe you've been through all that stress! I really hope the rest of you pregnancy goes smoothly for you 🙏 I will definitely be speaking to my MW at the appt this Friday and will tell her how awful I've been feeling. Thanks for the advice and all the best for you and your little boy 🙏💙 I will stay strong for my little one too xx

@Krazynights34 wow your post you are such a strong woman! What you've been through I can't believe it! I'm so happy for you that your DD made it and it's beautiful to read that she can play and goes to nursery 💖💖
I hope all goes well on Friday with her walker do keep me posted won't you!?
Thank you so much for your kind words for us and Lucas and for your advice! I will mention this today and hope they can support us! 🙏💙🤞🏼
All the best to you and your DD x x

@MabelTheCow thank you for your post. You're right this could be the case. I guess we shall wait and see what they say for the both of us 🙏

Thinking of you today and always 💙

@MisssC3025 also when I did believe my waters had broken I contacted the PROMS to get advice and I couldn't believe the rights we have as expecting mothers I didn't know we have to right to say how we want delivery and when ever please have a read of the NICE policy I believe that what it was called your entitled to ask to move hospitals etc

Hi all. Thanks for those of you sending your wishes and asking for updates. We have an update following this afternoon's appt. We got a lot more info this time. I came home and typed it all up into my notes on my phone, so I'll just copy and paste that in here. Any thoughts, comments etc please comment and let me know if you think we need to consider anything else. Would greatly appreciate it. 😘

-No to csection as too many risks
-give birth at local's Butterfly unit. Own private room.
-can go into labour at any time due to too much fluid. Getting a scan in two weeks to check this is actually the case.
-4weeks time going for a another scan and consultant appt with two specialists senior sonographer and a further meeting with a consultant.
-if there are changes with measurement etc could be referred elsewhere.
-recommend going full term and giving birth at Local naturally. No need for induction unless something else occurs in next few months.

During labour:
-assess/monitor baby’s heart. If heart beat drops baby may be stillborn, but we’re in the best unit to have as long as we want with baby. DP can stay there.

-if baby is born and is alive they will assess breathing. 1st stage is putting baby on ventilator... will be able to assess if baby can swallow. If not it’s not advised to continue intervention as may have more risks to baby (eg. Resuscitation will distress baby even more).
-if baby is showing good signs may go into neonatal unit to be monitored and cared for.
-we can arrange a meeting to see the butterfly/neonatal unit at any time.

-unable to tell us what average size of chest should be. Consultant was confused with this. Said he was going to look into this.

That's what I've typed up. So it's looking like I'll be giving birth naturally at the local, but at least we know we are in the right care (in the right ward away from other expecting mums). They don't believe there is any point referring us to hospitals further away if it's most likely going to be the same outcome. They will only refer us if the next few scans say otherwise.

Praying for little Lucas 🙏💙🙏 thanks all.

Praying and sending positivity for Lucas 💙

Lots of info there, hope all does go well for family x