September 2019 #9 - for Twittlebee **title edited by MNHQ**

[IVEgottheDECAF]

New thread ladies as i feel the end of the last one may fill quickly following last nights news!

Once again congratulation Twittle & family

Oh Twittle, you must stop trying to blame yourself, it really isn't any of those things that caused it. It's just the most horrible, awful, twist of fate, and you have been so, so unlucky to have it happen to you all. Unlucky doesn't even cover it. But try your hardest not to torture yourself, your body and mind needs you to look after yourself in order to recover.

The Sands website sounds like it works very hard to keep its members safe and protected, taking all that time to authorise you, thats a pain but at least you know it should be a safe space.

Twittle I know you wouldn't judge those other 15 mothers each day, and you'd know that if they had caffeine, the odd glass of wine, etc it's nothing to do with it for them. It's hard, but try to be as kind to yourself as you would be to another woman in your place.
In case it helps AT ALL - caffeine is only associated with first trimester pregnancy loss, and you'd know if fetal alcohol syndrome had been a factor, or toxoplasmosis (which is the cat poo problem). So there is no way those things contributed.
Those joyful moments when you were pregnant are part of what gives meaning to Roy's time here. You carried him with joy and hope, and that was your gift to him, and his to you.
I know joy feels very far away now, but what happened later doesn't make it "false". You were not wrong to feel happy, just as you are not wrong to feel how you do now.

In all seriousness Twittle just imagine for one instant that the person you were saying those things about being stupid too was not you but another person? I bet you would never be so unkind to someone else so why are you being so unkind to yourself? I bet you would never think someone else had caused what happened with the odd glass of wine or coffee so why are you telling yourself it’s your fault.

Please be kind to yourself. I know it’s hard but you are not to blame.

That must be hard to deal with too twittle.

I hope you and dh have had something yummy to eat for lunch together. I'd highly recommend going to sit outside for a little while to enjoy the sunshine on your lunch break too. Don't do what I've just done though and burn your legs on a black chair that's been sat baking all morning!

Really glad you’ve been accepted to the SANDS online community - I really hope having another safe space to talk helps, please please try and be a bit more kind to yourself - I have no doubt in my mind that you are an amazing mother and there is nothing you could have ever done to change the outcome of your pregnancy with Roy, and your other little baby xx

The Sands community online seems to be pretty lacking, everything apart from the "hello I'm new here" board is years old. I dont think it will be able to provide me with any help, I was hoping for a place to find people in a similar situation to talk about everything and help find some answers or what the next steps are etc.

I know you are all right though, I wouldnt judge anyone else as harshly as i am judging myself.

Back in the actual office today rather than working from home and feel much better being surrounded my colleagues.

Is there a local group to you? I know it must feel daunting to think about going but certainly look and see if tryouts can find contact details. We live pretty rurally and there is still a group within 25 miles from here that my friend accessed when she needed it.

Yes there is a "local" group - its about half hour away but it isnt accessible via public transport so not really possible for me to get to their next meeting. They only meet once a month too.

Maybe I should seek out my GP for help?

If you speak to the local contact they might be able to advise on one to one support before you are able to get to the main group. Your Gp should be able to advise too but I think on the whole they can be hit and miss and less specialised.

The hospice just phoned me, they rang just to see how I am and it was so good to just talk to someone actually. She has offered me their support going forward and will give me information on the events they run for bereaved parents.

I’m pleased you’ve spoken to someone, Twittle. Is the hospice local enough to you that you’re likely to be able to get to events? It’s a shame that the online community is quiet, September sounds like a long time to wait to start accessing help. If the hospice events aren’t soon or convenient I’d second easter’s suggestion of speaking to the local SANDS contact for ideas of what you can do in the meantime.

Hope you’ve managed to have a more “normal” day at work with colleagues (and air con!) I know that when I was struggling with something I’d generally feel a lot better while I was at work where there were distractions.

Hey twittle. So glad to hear you've spoken with the hospice. Do call them again or sands for ideas of what you can do locally or via telephone. I'd also say definitely make contact with your gp but be prepared for a wait so that's why I think calling the other 2 for "in the meantime" support would be good.

Sorry to hear the online forum isn't much help, what a shame. Maybe their acceptance thing is too strict and then people don't chase if they don't hear back?

Nice to hear the office environment was a bit of a crutch. To be honest, as much as I moan about my lot, when I was signed off for weeks and weeks I was back within a couple of days being out of hospital. It's nice to be surrounded by the familiar and also the distraction is worth ya weight in gold.

Are you and dh still rubbing along ok? I remember you said about communicating in writing sometimes? I think that's absolutely fine if that's the way it has to be for a while. Also, gives both sides time to look at what the other has written and respond when they've formulated exactly what they mean to say.

Oh ladies, thank you so much for the lovely card and candle and making a donation to the Hospice too. It's so so kind of you all 💗

That candle came just at the right time too, I had a very similar one in my shopping basket and was just waiting for pay day before purchasing!

The candle just looks so perfect next to his little photo frame we have xx

Aw, that's a beautiful set up there twittle, beautiful photos. X

Twittle that looks gorgeous!
I wanted to echo the others re the hospice. Hospices are so brilliant, definitely take them up! I really benefited from support from one in very different circumstances, and it takes some very special people to work there. Yours sounds like a good one.

I actually had the bereavement midwife call me today as mum chased again. She said I'm in an awkward position because technically I'm in between everyone's care due to me firstly using the One-to-one midwives (which means I forfeited the hospital midwives....?!?), then Roy was born in Colchester but actually died in Norwich so the whole story didn't play out in one place. Colchester sees it more of Norwich's responsibility but Norwich isn't my NHS trust. So this is why I've had like no support as I've pretty much slipped through the nets.

Also, I was told that the likely cause of all this was Group Strep B. Something I wasn't tested for because it's not routinely tested for on NHS but if I was tested for it, then there would have been a much higher chance of Roy still being here today.

@TwittleBee That's terrible that you're falling through the cracks and I hope they get their acts together and give you the support they need.

Re Group Strep B, you're right that it's not tested routinely, and even midwives/NCT etc don't suggest you get tested for it until 36 weeks onwards, so you never would've known/been advised to have been tested earlier.

We're all thinking of you. You've been so brave xxx

*support you need

I just keep thinking, if they tested me for it as soon as my waters broke, they could have got Roy out straight away to avoid him getting infected and then it wouldn't have caused the sepsis and the bleeding on the lungs and brain.

Hi @TwittleBee - I’m not part of your birth group but didn’t want to read and run. Are you still having trouble getting support from sands online? I have a few loss parent friends (including one who has lost a rainbow baby). I think support from the loss community is good on Facebook and Instagram but I’ve not been through this myself. If you would like someone to talk to then I can put you in touch with a few real people - DM me if you like and I’ll connect you to my friends. None of this is your fault, it’s just very very sad. Nothing you did had any bearing on this

@TwittleBee I can understand you feeling like that, although I think the tests take 24-48 hours to get the results back from (Although I am not expert).
I think it will be so easy for you to think what should/could have happened, and I feel for you so much and can't imagine what you're having to go through x

@TwittleBee
I completely understand how you feel about the lack of testing. I think it does take some time for the results to come through. This is so hard for you. Please do contact your Gp if you need more support. Perhaps they can offer you bereavement counselling? Your local church may also be able to help. I know our's do a bereavement course.

Twittle your candle looks lovely with Roy's picture ❤️

Well that's a complete shock with regards to it being likely to be Strep B. As Peanut Butter said, the results wouldn't have come back earlier anyway, but it must be a little bit of a help to be starting to get some answers. Fingers crossed it's something that the hospital can learn from and put new measures in place.

Twittle your candle and picture of Roy look beautiful.
I'm annoyed for you and your lack of help. With many babies who pass not long after birth they will be born and be moved between trusts. It doesn't change the fact that parents are suffering and need help, good for your mum chasing it must be hard for her, you need more of that.

Dear twittlebee, this is a lurker from one of your other threads coming to say how very sorry I am for your loss. Wishing strength to you and your family as you come to terms with this. With love