Looking for support from women who lost their twins from acute twin to twin syndrome.

[Ella31]

Hi all, a week ago I posted here. 29 weeks pregnant with monochorionic twins. I experienced no movement and went to hospital. I unfortunately lost my little boy firs as he showed no heartbeat and ten minutes later I was rushed into surgery to save my other little boy. My beautiful surviving twin died 2 days ago. He was so ill. We had to let him go. I had a perfect pregnancy up until a week ago but this insidious condition hit us within hours. Because its acute , its fast and deadly but I'm so heartbroken. I feel robbed. Looking for support and other experiences. I don't feel like a mother. And at 32 now I'm wondering if I'll ever raise a healthy child.

[aswarmofmidges]

Sorry I have no experience- hadn't heard of that until you posted - just giving this a bump

It sounds truly awful

What I can say is that yes you are a mother , the only person who knew those babies , you loved them and that's what they knew - dad might be feeling it too, I don't want to minimise his feelings but the attachment of the mother at the early stages is something hard to explain

Just one point to disagree with you - are not that old however for future babies

[Callmemummynotmaaa]

OP I’m so so sorry for your losses. I can’t comment on the twin syndrome, but I lost a baby late into second trimester, before I had other children. It was related to sudden placental failure but I had no prior notice (lack of heartbeat identified at growth scan).
I was devastated. I chose not to take full maternity leave instead taking a few weeks bereavement leave (as personally I didn’t want to be alone with my thoughts for too long). In hindsight I went back to work too quickly. At the time, I found some of the charity supports (Sands and Child Bereavement UK) brilliant.

I was not yet 30. It was my 3rd miss and we’d been trying to have kids since our mid twenties. I distinctly recall that I hated being called “mum” as…for me…it was my biggest hurt/fear that I may never get to be.
*edited to add - my worry was that I didn’t want that to be my only version of parenthood. I had dreams of a child getting to call me Mum, which was what I desperately wanted. Those telling me I already was…left me feeling angry. As I type this, I know that others don’t feel this way…but I did. I hadn’t gotten to be a ‘mum’ to my baby boy in the way I had pictured or imagined or hoped for. And hence I didn’t want to use those terms. Years later, typing this, my eyes still well with tears as I remember how scared/hurt/angry I was…and how difficult some of the interactions I had with healthcare staff were at the time (some of whom were brilliant).

I’m cautious in saying this…because I know my focus at the time was on trying again as soon as possible. And ultimately, I have been Incredibly lucky and have had two healthy children (as well as several other earlier pregnancy losses, importantly for unrelated reasons)…But…when I look back. I wished more people could have told me to forgive myself. I did nothing wrong. It’s utterly horrendous to be in a very tiny minority of people, whose pregnancies go woefully wrong. But it happens, and it doesn’t mean we are to blame.

In subsequent pregnancies I had higher monitoring…but…I also stay off boards/forums etc. Because…it has changed my perception of pregnancy and parenthood. (Eg on these threads I can manage the conception areas of the site, but not the pregnancy forum with any frequency). I’ve learnt there isn’t a ‘safe’ window and I tend to be cautious, rather than excited, about what could be.
I still feel envious that others have easier experiences…but I think that just means I’m human.

It’s such early days for you and your family. Have you support around you that can help you over the next few days and weeks? Your whole world has shifted on its axis. Is there a hospital bereavement team? perinatal team? Or neonatal psychologist? (I know there may not be!). There is no ‘normal’ way to process the experiences you’ve had to survive over the last week. I’m so so sorry this has happened to you. Please try to show yourself kindness, and give yourself time. It’s ok not to be ok. Sending you massive hugs and hoping you have people who hug/hold you in real life too.

[TeaKitten]

You are a mother OP, your boys existed and you will forever be a mother. I haven’t experienced a twin pregnancy, but my daughter was stillborn at 35 weeks. She’d developed a heart arrhythmia condition late in the pregnancy and I didn’t no. Her movement changed and I reported it but was told it’s fine, by the time I was listened to by a different midwife a few days later it was too late, she was incredibly unwell. She died just before they were going to deliver. I did go on to have another baby, and she even developed the same condition but thankfully I was having extra checks so it was picked up, she ended up being born prematurely but is a healthy happy child now. SANDs support groups were an amazing support to me, but it’s a different journey for everyone. So so sorry to hear about your little boys OP 💐

[Terfosaurus]

I'm so sorry to hear this OP. I have no direct experience, but a relative lost twins at 38 weeks. They've gone on to have 2 healthy children.

and love to you and your beautiful boys.

[CandyLeBonBon]

So sorry for your loss. I saw your previous thread and am so sad for you. Nothing useful to add other than my heartfelt condolences 💐

[EasterIssland]

Sorry to hear about your loss.
i do really recommend you a perinatal counselling, they’ll help you dealing with this situation and your emotions

[AgaMM]

Oh Ella. I’ve been thinking about you a lot since you first posted.

I am unable to answer your question, but just wanted to say I am so sorry for your loss and sending you love and best wishes.

[PressPauseontheMenopause]

I am so sorry for your loss, sending love and support. I don't know if this is relevant to your experience, but I know of this excellent charity:

www.wisemantrust.co.uk/#about-us

Xx

[Ella31]

Thank you. There's nothing I could have done apparently. This acute twin to twin at 29 weeks strikes fast so i did everything right. But I'm so heartbroken.

[StillWantingADog]

@Ella31
so sorry for your losses. I cannot imagine how sad a situation this is. I do hope you have a wonderful dp and family and friends to support you through this most tragic times.

[Ella31]

I have such an urge to try again. Do I really have to wait at least 6 months.

[aswarmofmidges]

If you have been advised to wait - do so
You have to do what is best for you an future baby

[Ella31]

@aswarmofmidges

If you have been advised to wait - do so
You have to do what is best for you an future baby

I haven't been but I assumed that would be normal. I'm so aware that I'm in shock at the moment so I wouldn't contemplate anything until the new year. My heart and home just feels so empty. My little boys were so beautiful

[Blughbablugh]

I'm so so sorry that you are going through this! I followed your other thread. I'm afraid I don't have experience of this but just wanted to say that time is absolutely on your side. Take time out for now and get some support, you are going through a very difficult time and will need time to come to terms with this. You are absolutely and will always be a mother to those precious little boys!

[TeaKitten]

@Ella31

I have such an urge to try again. Do I really have to wait at least 6 months.

I think the 6 months is fairly important after a c section due to the scar healing. I think a gap is quite healthy too. I conceived my next baby within a few months and it was quite traumatic whilst going through all the first anniversaries milestones in my previous pregnancy, while pregnant again, more time would probably have been healthier. But I couldn’t wait so I don’t regret it. I totally understand that pull to want to try again though and just be at the end of that TTC and pregnancy journey and to no if there’s hope. Take care of yourself OP.

[Toddlerteaplease]

I knew this would be you as soon as I saw the thread title. I'm so very sorry to hear your news. Be knitting d to yourself. You've done nothing wrong.

[Sisterpita]

@Ella31 so sorry to hear your sad news.

[TooOldForThisNonsense]

I’m so sorry. What tragic news. Xxxxx

[PosyPrettyToes]

I am so sorry, Ella. There’s nothing you could have done, truly there isn’t. You absolutely need to wait if you had a section - a pregnancy immediately after one can be very dangerous due to the risk of uterine rupture.

[Justhereforaibu1]

I'm so sorry to hear this Ella. I saw the title and hoped it wouldn't be you. I have no advice but my heart goes out to you. Big hugs.

[Ella31]

I know I'm probably trying to replace the emptiness i feel right now.

[NoFaceNoName]

Oh Ella I’m so so sorry to read this update. I have been thinking of you and your boys since you updated your last post. Sending you love and strength, and as long as the doctors don’t advise strongly against it, you should do what you feel is right, when you feel it’s right. Please go easy on yourself and give yourself some time to process, I’m so so sorry x

[LightSpeeds]

I'm so very very sorry to hear about your boys (was following your other post).

I lost a twin pregnancy (at different stages). The heartache I felt was just about unbearable for a very long time. But time does heal you - eventually.

I did go on to have four more children (including twins), though.

Sending you love, strength and support during this difficult time. x

[Lazyhazydays]

I'm so sorry for your losses. I can't relate entirely but I did lose my first little boy who was born sleeping mid-pregnancy. There is no right or wrong way to grieve and no right or wrong next steps. I felt my only way to fill some of my emptiness was to try again, pretty much as soon as I physically could. It was the only way I could feel like I had control of a wholly uncontrollable situation. Your doctors will understand your wish to start trying, if that is what you want, and they will tell you as soon as you can. I highly recommend Sands, sadly the community is so much bigger than it should be but the support is incredible. Sending hugs x

[Obvs92]

Hi Ella,

I'm so sorry. There are very few words which can help at a time like this. The Twins Trust runs various services for bereaved twin parents. This includes a private Facebook group of other parents who've been in the same position. You'll find it really helpful in terms of both practical and emotional support from people who've truly understand. If you PM me I can invite you to the group, but you'll then need to wait for the admins to admit you.

When we lost our twins at 23w, we also had bereavement counselling with Petals. This really helped. I wonder if there is something similar near you?

Thinking of you tonight xxx