Pregnancy after MMC

Hi ladies,

Been seen by the fetal medicine team today in Worcester and we've been told that sadly there is no way this baby will live. I will have to be induced and give birth as they've said surgery is no longer an option and is too risky.

Still processing everything on the drive home with DH but I feel grateful we've finally been given a straight answer rather than the constant confusion we've had so far.

Sending you all love and positivity for you and your babies xxxxxx

Hey @Frankincense88 - ok that is frustrating but hopefully gives a little light at the end of the tunnel. Keep doing what you are doing and hopefully baby can catch up...i've got everything crossed for you.

As regards to NIPT - your Trust should be able to do this for you for free....it is a blood test that checks the fetal dna and you shouldn't be too far gone to do this (just later than usual). I don't think it is fair if they're letting you pay privately for this in an already uncertain time? Have you asked them?

A 24 week delivery is scary but is doable - it'll be bloody hard but at least you will all be in the best place to have the best chance.

Keep at it with your midwife - I have and am now considering a home birth with all this Covid malarky. I've got my first visit on the 12th November when I will be 26 weeks. So far, I'm feeling ok, starting to feel him sloshing around inside but movements are still a bit muted due to my placenta. Counting down the days to my maternity leave at the moment as work is stressing me out a bit too much.

Sending you lots of love and hugs.

xoxo

@msanne @MrsTtobe @Bells993 @Leaf87

Hi ladies hope you're all well. 💕 Had my scan and consultant appointment today. Basically we still don't really know wtf is going on. So - positives: baby has grown in line with where it should be (16 weeks in Friday) and bladder now appearing on ultrasound. Small amount of liquid in kidneys and bladder which show its ingesting what tiny bit of fluid there is.

Negatives - still barely any fluid. Still can't really take decent measurements or get any clear pics of baby. Consultant said atm there's no way of knowing what's causing it (whether it's linked to a condition / abnormality or just bad luck) so been booked in for my anomaly scan on the 11th where I'll be 18 weeks. They said biggest concern atm is baby's lung development as if baby keeps growing but lungs don't develop it's unlikely baby will be able to survive anyway. If I make it as far as 24 weeks they may deliver early in Birmingham (our biggest nearby hospital) and time will tell. They can't say for certain how developed lung tissue is until baby is born and actually tries using them. I also can't have my screenings done as it's too late - had bloods done for Down's today but they said they will have to wait until next scan to look for other things. If I come back as high risk we'll have to pay privately for NIPT testing.

So essentially we're still in shitty limbo with no real answers.

I hope you're all doing well and enjoying entering your (3rd?!) trimesters. Keep sending positive vibes my way. I've got a midwife appt Monday so will be telling her how hopeless and useless I feel 😔 xxx

@Frankincense88 = good luck for today hun - thinking of you xoxo

@msanne thank you 🤞🏼💕 consultant appointment on the 27th so will keep you posted in the meantime. Thank you for all of your kindness xxxx

@Frankincense88 - ok hun. Sounds like you've got a plan and it will work for you.

Here if you need us xoxo

@msanne they said that they could do a test at 16 weeks but it'd only test for downs not Edward's or Patau's. I think if this one goes pear shaped we'll stop actively trying for a little while and just focus on getting our house finished and get a dog. I don't think I can take any more disappointment this year. Hopefully next appointment will give us some more answers 🤞🏼 will keep you all posted Xxx

@Frankincense88 - i get that. It is definitely harder when it is your first pregnancy.
In regards to trisomies - they can do a blood test for that - SAFE test. It is the equivalent of the NIPT tests offered privately. If the cost for this is too high (the NHS should pay for it), then they can perform a CVS on you as you are past 13 weeks. Although this is an invasive procedure, if your consultant is experienced in it - then the risk really is minimized. This is the most certain way to rule out the trisomies.

Also, if this pregnancy doesn't work out - you should automatically be put on high risk for your next pregnancy - this means you should get the SAFE test at 10 weeks and earlier scans if required. I went to he EPU from 7 weeks for this pregnancy and they have seen me every time because of my history. It is still a nerve-wracking time, but you should get the extra reassurance you need from your local Trust...you just may have to push for it.

I can also tell you, that every pregnancy and birth is so different. You cannot let this pregnancy define your idea of what could be. Remember, what will be, will be. The only thing that is in your control is the way you handle it - so choose to handle it to get yourself through it. You must allow yourself to grieve, but you must also let yourself heal. This is not your fault and is out of your control.
Try to take some time for yourself hun over the next two weeks - lockdown doesn't make it easy, but technology is amazing these days and sleep is our best friend :)
Talk to your Trust and see if there is any other reassurance/tests that they can give you so that you can make an informed decision.
xoxo

@msanne nope, sadly they can't rule out any trisonomys because there isn't enough fluid to do the NT or take any clear measurements so there's the added worry that even if fluid levels increase then baby may still have something wrong and not survive.

They've been pretty good tbh because I've made it very clear I'm struggling and have said if I want to make an appointment to speak to the consultant about my options then I can but it seems like a bit of a waste because they still won't be able to see anything or tell us anything we don't already know because the scans simply aren't clear enough due to lack of fluid. So they've advised us to wait in the hope we might be able to see something on the 27th but I'm really not holding out much hope. I just don't think I'll cope knowing my first experience of birth could result in no baby and I think it'll make any subsequent pregnancies full of anxiety and worry. In all honesty I'm just glad I'm working from home and don't have the added pressure of being in school and putting on a brave face for 150 kids each day! Xxx

Hey @Frankincense88,

Sorry to hear that you still don't have any clarity. Have they ruled out the trisomies for you? It is a bit sucky that they keep making you wait so long - is there a reason for the delay other than Consultant availability?

Not sure if it is helpful, but I had something similar earlier this year when our baby was sick and I really threw my toys out of the pram before they escalated my level of care and timeliness of my appointments. I know that it's the last thing you want to do when you are feeling so emotional, but if you aren't up to it, get your partner to do it. They should see you sooner - you are high risk and on edge, no reason why you should have to wait two weeks.
As to what may follow; please remember, whatever you will have to do, you will be strong enough to get through it. You will cry and you will hurt, but you will heal. I delivered our little girl at 16 weeks in March (by choice as I didn't want to do it surgically) and it was by far the worst thing I have ever had to do. But, my body did heal, my mind has good days and bad days, but this healthy pregnancy which I am having now is extra special because of it. There will be a rainbow at the end of it for you. I always think, that our little girl gave up her place to allow her little brother to come into the world and we will always have a guardian angel. You are doing the right thing in fighting for her, and i'm praying for a miracle for you.

Please let us know if there is anything you want to talk about or need advice on.

Sending you the biggest love.

xoxo

@msanne @MrsTtobe @Bells993 @Leaf87

Hi ladies, unfortunately today we have no more answers than we did 2 weeks ago. Fluid levels have not improved and they are still unable to do measurements / screenings so I'm now past the point where they could be done with any real accuracy which is causing additional worry.

We've been offered the option to terminate again today or to wait until our consultant appointment on the 27th to see if any developments but in all honesty I'm not holding out much hope. We've decided to wait because I couldn't bring myself to terminate after seeing baby jiggling about and waving on screen. If there's even the smallest chance I'd still rather hedge my bets even though the odds are stacked against us.

My biggest worry is that I will have to actually give birth as I'll be 16 weeks at my next appointment and my hospital does not generally offer surgical management past 8 weeks but they have assured me that if it comes to that, they can send me elsewhere for it (likely a big city with more facilities.)

They checked the stomach, kidneys and cord which look ok but couldn't identify a bladder which could be the cause of all this and meaning baby won't live. But we'll find out more on the 27th hopefully. I'm starting to show now and most of my clothes are a bit tight which is even more heartbreaking because I can't stand to look at myself in the mirror 😢

Thanks for thinking of me. I hope you're all doing well and sending love to all 💕💕💕

@Frankincense88 - praying for you today xoxo

Nice to hear from you @Bells993 glad you're doing well and baby bells is all good. ❤ You going to find out the sex or sticking to your guns and waiting?

@Frankincense88 thinking of you today at your scan. 🙏🙏🙏 Please let us know how you get on xxx

@Frankincense88 I'm so so sorry. I can't begin to imagine how you must be feeling. You're stuck in such a crappy situation. You're at a stage in your pregnancy now where you should be able to relax a little and start enjoying it so it's awful that you still have all this going on.
Baby is clearly a little fighter though holding on through it all and im sending you love and lots of prayers.🙏

@Bells993 how are you? Hope everything is ok? Xx

@Frankincense88 - I am so sorry hun. It really is hopeless when you cannot do anything to make it better. I feel absolutely sick thinking about this- I am praying that the situation improves by the 12th. If it doesn't, you are already being incredibly strong and you will get through it to the other side - 2020 is shit. 2021 is going to be better - so please focus on the future than what is present.
I'm happy that work is being accomodating of you - and I hope you get the time you need to heal and process this.

Sending you the biggest love and thoughts during this difficult time for you.

Lots and lots of love xoxo

@Leaf87 I'm trying to be positive but it's very hard given the circumstances. This year has been absolutely dreadful. It's our first wedding anniversary in a couple of weeks as well so I just hope we know what's what before that comes around.

I think we've decided on a Bedlington Whippet because they're low maintenance, sweet natured and laid back. DH has agreed because I've just said I know I won't cope very well with more bad news and I need some positivity to focus on xxx

@Frankincense88 I am so sorry, I am sat here crying for you. You are amazingly strong stay positive look after yourself and we will all hope for the best for you!! This was not the news I wanted for you. Working from home will be better for you but if it get too much take some time to yourself!

We are having a burnadoodle so he will be a big boy!! However I wanted a dog that would be laid back but still needs one nice walk a day, and would be good with kids (one day). I am also so over covid its well and truly making 2O20 even harder than it should be!!! 💛💛

@msanne @Leaf87 @MrsTtobe @Bells993

Hi girls,

12 week scan didn't go so well. Couldn't do the screening or any measurements as baby face down and despite drinking 3 bottles of water my bladder still wasn't full enough. They've also said the situation with the reduced amniotic fluid in the sac hasn't improved and the next couple of weeks will be make or break really. They offered me a termination on Thursday and I said no, but I'm under consultant care now and being monitored. If I become unwell and it's an infection it's basically game over for me and I'll have to go in for surgery. Got another scan on the 12th where I think we'll know for sure - they've said it could go either way but in my heart I don't think it's going to end well. I've had reduced fluid since 7/8 weeks and I'm now 13 with no improvement. I've been signed off to WFH until November because I won't cope if I miscarry in school it'll be traumatising so going to WFH until we know what's what and I know I'm safe here if something happens. Not the news we wanted at all and it's taken me a few days to process it but the consultant said there's literally nothing I can do, it'll either improve or it won't.

Keep everything crossed for me but deep down I think I know how this is going to end. If this one doesn't work out that'll be me done for a while, we'll go on some nice holidays once covid buggers off and get a dog to fill the hole in our family 💕 out of interest @Leaf87 what breed are you getting? Xxx

@Frankincense88 I have been thinking of you, is all OK?

@msanne so glad all ok your end time is flying by! 💛

Hey @Frankincense88 - good luck today - let us know how you get on!

@MrsTtobe - it will be ok. Babies scrunch themselves up all the time - think of it as another opportunity to see your bubba for free! The 20 weeks is nerve-wracking and of course, sometimes bad news happens - but stay positive....please. If you are really nervous about waiting for another 2 weeks phone your local MAU (for 20 weeks plus) and tell them you're feeling off and want a reassurance scan. They should give it to you.

@Leaf87 - sorry to hear about you exchanging. These are such strange times, people are losing their jobs everywhere. I am happy you've got another offer and hope this one sticks. We also had our fair share of mishaps before we moved - but it DID happen and we are settled now. 2020 is nearly over and it WILL be a fresh and better start for you.

Lots of love ladies xoxo

Hi all,
Glad to hear everyone is OK, @Frankincense88 please let us know how you get on today 12 weeks wow such a miles stone. I understand the nerves but you will be fine.

@MrsTtobe 20 weeks! That has gone quick again i am sure its nothing to worry about try to relax tqo weeks will fly by!
So glad to hear everyone is ok! Our buyer pulled out Friday (on exchange day 😡) so move delayed somewhat.... we did have a new offer yesterday so will hopefully get things back on track ASAP....like I keep saying 2020 just not my year. Puppy arrives in two weeks so that will nice.
Have a lovely Thursday ladies. 💛

Hey, lovely to hear from you. Ive just been so so busy since going back to work. It's chaos! My daughter really not settling with the child minder either. 😭
I had my 20 week scan yesterday. Horrible experience! Firstly they've worried me sick as ive had to be booked in for a re scan in 2 weeks as the baby was apparently in an awkward position and they couldn't do measurements/ checks properly! 😔 Then while I was sitting outside the room waiting to be called for my obs I could hear a lady clearly heartbroken sobbing coming from the scan room next to me. She was then ushered out and into the counselling room behind where I was sitting. I just wanted to hug her. Brought it all back. 😢

@msanne I know what you mean. Im struggling! I'm so big this time and keep getting really breathless. 😔 I'm struggling to pick my 2yo up.
Have you actually saw a midwife yet? My first one is at 24 weeks.

@Frankincense88 honestly you will be fine. You've had lots of scans and previous checks so try (hard I know) to enjoy it. ❤

@Bells993 @Leaf87 how are you both? X

@msanne Hey! 12 week scan is tomorrow morning. Bricking it. I'm still so anxious that I'm going to get there and something will be wrong. Keep everything crossed for me!

I've been signed off for the last two weeks because some selfish parent (who is also a member of staff who should know better) sent their Y11 child to school with 2/3 covid symptoms and they essentially sat front row and coughed all through my lesson so I had an awful cold (covid test negative) but due to not being able to take flu meds it turned into a chest infection and it was so bad I could hardly breathe. I slept upright on the sofa for a week. Been on antibiotics but finished them yesterday. So bloody cross!! I'm back tomorrow after my scan though and we've got a WFH INSET on Friday so no 'proper' teaching until Monday.

It was my birthday yesterday and we essentially had a lockdown birthday with take out and cake at home!

Have you been given a prescription for iron tablets? I'm supposed to start taking my 150mg aspirin today as I'm 12 weeks but going to start once I've got clarity after my scan tomorrow!

@MrsTtobe @Bells993 @Leaf87 hope you ladies are all okay too! Xxxx

Hey Ladies,

@Frankincense88 - have you had your 12-week scan yet - hope everything looked ok?

@Leaf87 - how are you doing hun? It's nearly house move time for you isn't it?

@Bells993 and @MrsTtobe - how are you ladies dealing?

I'm overall ok. Had some bloods done yesterday and I need to take some serious iron supplements. Working is getting harder by the day and it's really taking up a lot of energy to motivate myself not to call in sick (I've managed so far). It's my son's 6th Birthday next week so I've been in full "lockdown birthday" prep mode - I've got lots of baking to do!

Sending you all lots of love
xoxo