Will I ever feel better? Missing my son's twin so much

[Pixle333]

I don't know where to start, and I apologise that this will probably be a long message... I got pregnant from IVF in January 2006 following a miscarriage from an earlier attempt, and was delighted to find out it was twins. But at our 21wk scan it was revealed that one of the boys had severe ventriculomegaly (enlarged ventricles in his brain). We were advised to terminate his pregnancy but were also told that if we did this at that stage we might also lose his brother. So we took the impossible decision to keep going with the pregnancy and to terminate his pregnancy at 34wks to give his brother a chance of living.

At 30wks, I started to have tummy 'banding' and went into hospital, and with immense sadness that I cannot put into words, we said goodbye to my sweet boy. Just 6 hours later, my waters broke and I went into labour. I had a terrifying crash caesarean under general anaesthetic because my surviving son's cord was prolapsed (his heart rate dropped to 50bpm) and was rushed to theatre with the ob's hand inside me to hold the cord in place. When I came round, my surviving son was in special care, and they brought me my dead son. We were able to spend lots of lovely time with him, and a lovely nurse even arranged for my surviving son to be brought to meet his brother so we could have photos taken of him with his twin and us as a family. His post mortem revealed that he had gross ventriculomegaly, early congenital heart failure, and a systemic enterococcus infection. The consultant said that had the pregnancy gone on any longer, my surviving son is also likely to have got the infection.

21 months on, things have got better in many ways and my son is such an immense, total and incredible joy. He has been crucial in my healing process.

But I've just had two more IVFs, both of which have failed, and I am now feeling like he will never have a 'live' sibling and I am feeling like I have let him down, let his brother down, let everybody down.

I see a counsellor at the hospital, but at the end of the day you go home to your own grief and your own head, and I wonder - do things ever get better?

Sorry, such a long message. I've gone to write so many times and then not done it because I know other people go through much worse things than this. But today as I walked the dog round the park with my son in his buggy, I felt so much pain, missing my other little boy and wondering how I'll ever be able to make it up to my little boy who's here.

Pixle333
xxx

[yurt1]

gosh how dreadful It sounds trite, but I think time makes it more bearable. My friend who lost a child said that she will never lose her grief for her child but she can rebuild her life around it.

Do carry on with the counselling, it's such a big thing for you all.

[MrsWeasley]

oh pixle333 I wish I could find words to ease your pain.

Sending your virtual {{{{{hugs}}}}}

Someone will be along to give you the right advice shortly.

[lilyloo]

pixle so for your loss have you seen this thread these mummys will know how your feeling i'm sure hope they can help you

[constancereader]

I am so sorry about your loss.
It all sounds so traumatic and stressful, I can't even begin to imagine what you have been though. I can relate in some way however as, like you, I found out that my first ds had fatal problems at 20 weeks - but as he was not a twin things were more straightforward in some ways.

I don't have much advice really except that it did get better for me. I now have a ds who will also never know his brother. I will tell him about his older brother though, as soon as he is old enough to understand.

You don't need to make it up to your son - you are already giving him the best care and love anyone could give their child. I'm sure other people will be answering you who will be more help, but I had to express my sympathy.

[cyteen]

Pixie, I'm so sorry for everything you've been through. Have just posted a big long ramble about my own grief over a completely different scenario and so much of what you've said rings true with me, about the pain. I didn't want to not say anything, even though I've never been in the position you're in and can't imagine how you feel.

I read somewhere that 'in grief, we do as we must, not as we should' - there's no right or wrong, please don't beat yourself up about perceived failures. You have not let anyone down; you have been let down, by circumstance or fate or nature or whatever you want to call it.

There's a great thread on here called 'Eris' thread for bereaved mummies', where lots of other people who have suffered the loss of a child are coming together to help each other. It might be helpful...they will know how you are feeling.

I'm so sorry. Take care of yourself and your lovely boy

[Bridie3]

I don't have any experience to offer but I am so sorry to hear of our pain. You are in my thoughts and prayers.

[cluckyagain]

Pixle - I'm so sorry for your and dp/dh's loss. I don't have experience of this but my mum lost her first (and only) ds at birth - stillborn, cord stuck between head and her pelvis which cut off blood supply to ds. She went on to have 2 dd's but I only found out about my brother when I was in my late teens and was utterly amazed as I had always presumed that I would have somehow 'known' about something like that - 'felt it' even. My mum occasionally talks about him, usually with tears and her biggest regret is that in those days they didn't let her see her son...no photo, nothing. The pain has eased with the years but she has still lost a son and still grieves although it is not as 'acute' now (46 years later) and she doesn't think about him daily anymore. I think what I'm trying to say is that you will always grieve the loss of your baby but that your ds won't - he has you and your love and that's enough. If he is lucky enough to have another sibling, great, but if not the only person who will worry about it is, in all likelihood, you. Good luck with the counsellingxx

[cluckyagain]

Sorry if that sounded 'simple' - I didn't mean it to.xx

[iamdingdong]

so sorry for what you are going through - there are others who have been through similar, I'll point them your way x

[shabster]

So sorry for your loss. I lost one of my twins 26 years ago. He was born with severe heart problems but lived for 7 months. So sad.....

Please come over to Eris' thread for bereaved mummies. Such a lovely group of mums. We will all help in whatever way we can - not always a sad thread, we have been known to smile and sometimes even grin.

Hurry over sweetheart - there is always someone who can help.

[Judy1234]

Poor you. In a strange sense he saved his brother. Apart from ultrasound I didn't have any tests when I was pregnant with my twins but I was very scared something would go wrong as twin births often do and I was lucky it was fine. I don't think my mother ever got over the loss of her baby but over time, over 40 years, she adjusted to it. Don't lose heart over the IVF. Two lots have failed. Perhaps the third will succeed.

[ninedragons]

You poor thing, that's such a terribly sad story.

What did you call the stillborn twin? My aunt lost a child and said that the biggest single helpful act anyone could do was mention her by name. There's almost a taboo about dead children and she found it so distressing - it was like her daughter had been erased.

[Pixle333]

Thank you all so so much. You have brought some light into a dark cloudy day. I've felt so lonely but you've all helped me so much. Ninedragons, I think you're right. People rarely talk about Oscar (my twin who died). When they were born, some people didn't even mention him.They only mentioned Ezra, my surviving son. I guess they didn't know what the 'protocol' was - not surprising, really. I didn't either!
Cluckyagain - I'm so sorry to hear about your mum. It shows how it's always there with us. I have regrets about not looking at Oscar enough. I sometimes feel like I wish I'd taken more time to look at every inch of his body, so that I 'knew' him.
Cyteen - thank you for your words about grief. I think that will become my mantra xxx
Shabster - I'm so sorry to hear about your twin. So hard. And thank you for your invitation to Eris' thread.

To you all, thank you so much for listening and for your kindness.

Pixle
xxx

[TotalChaos]

I'm very sorry you've been through so much and lost Oscar.

[swedishmum]

Pixle, it's an awful lot to go through. I also found out that one of my twins had a congenital defect at my 20 week scan (in fact, that's the first time we knew we were expecting twins) then we were on a huge bandwagon of being offered a partial termination which we declined for the other twin's sake. They were born at 36 weeks and twin 2 (Octavia) died 24 hours later. Twin 1 had very severe bronchiolitis and nearly died a couple of weeks later - we were in hospital 8 days and there was certainly one night no-one thought she'd pull through. It was a nightmare, and that's without your added stress of IVF - I've seen how much that in itself can take its toll on family members. I had a real desire to have a "normal" pregnancy and birth after that and I do realise how lucky I am to have my other children. I think being in that situation made me realise just what can happen in what many people think of as a straightforward happy time.
That was all 12 years ago - it's more of a warm special memory now and it's still special to E that she has a twin. She's really special. We're happy - you will be too. I kept a diary - I found writing things down really helpful. Sometimes it's a rant, sometimes it's just everyday stuff. You're going through so much with the IVF - I really wish you all the best.

[FloriaTosca]

Pixle; I'm so sorry for your loss. I lost a little girl, Robyn at 17 weeks gestation 19.5 months ago and though I have a wonderful almost 7 month old son now I still very much grieve for her every day.
Closer to your own experience, my cousin went into labour at 28 weeks with her ivf twins; twin 1, 1 lb 12oz (after months in scbu) is now a bouncy chatty 9 yr old; twin 2, Kaitlin, 1 lb 4oz, lived for just 4 days before suffering a fatal brain haemorrage .... My cousin went on to have another little girl by ivf (4th attempt)but still goes with the family to Kaitlins grave and weeps for their loss...understandably... Time doesnt heal such grief but it gives you enough distance to learn to cope with it....
I hope that if you try ivf again you have more sucess so that you can give your son a sibling as you obviously feel you need to but also,as others have suggested, have a look at Erins thread for bereaved mummies; it has some wondeful poems on there that I found reflected my own feelings about my lost daughter and some lovely women who made me realise that my grief was not unique and that I didnt need to bear it alone. ((((Hugs)))) and all best wishes.FT

[ninedragons]

Oscar's story is heartbreaking. It must be even harder for you because he was a twin, so you have a walking, talking, achingly loved reminder of what Oscar would have been like.

Don't regret not having looked at him for longer. As any parent knows, you could gaze at your child all day, every day for years and it wouldn't be enough. It was really good of the nurse to think to get a photo of the two brothers together - that could so easily have been overlooked.

Good luck with the IVF, and come back and tell us when you've got a blue line. Or just come back when you're having a shitty day - there's always someone about to listen.

[dippymother]

Such a sad story, really feel for you and what you're going through. Good luck with the IVF, you've been pregnant before and it may happen again next time.

There are a lot of bereaved mums on Eris' thread, with many sad tales, but there are also some lighthearted moments and I think it is of help to us all, whether we lost a child recently or many years ago.

I haven't lost a twin or had IVF, but I lost my son when he was 8 months old, 19 years ago. He was my firstborn and I found the months after his death extremely difficult, e.g. seeing mums locally who I knew from ante-natal classes with their children, no longer feeling able to pop in to Mothercare, what to do with all his baby equipment, toys and clothes etc etc.

You will get through it, just give it time. We are here to support you, just keep posting whenever you need to.

[mankymummy]

I'm so sorry to hear of your loss and agree with everything everyone else has said.

Please dont feel you have let anyone down or you have to make it up to your son. You were not responsible for what happened and your son will grow up happy knowing he has a mummy who loves him very much whether or not he has any siblings.

[Pixle333]

Thank you so much. I can't believe what a lovely bunch you all are (stop it, I'll cry again!).

Dippymother, I'm so sorry to hear about your son. I can't imagine how hard that must have been, truly. To have coped with that and got through it all shows how remarkable you really are.

Ninedragons, your comments about never being able to look at our children for long enough is so true. What you've said has given me comfort - thank you xx

Swedishmum, I'm just so sorry to hear about Octavia (beautiful name). You totally hit the nail on the head about a 'normal' pregnancy. I think I crave for that as well as a sibling for E. I think you're right, too, about the diary. I wrote one for the boys when I was pregnant so E would know what we did during my pregnancy (and so that I would be able to say positive things to him about it, because it was his pregnancy as well as Oscar's) but haven't written one since. Maybe now's the time to start again.

FloriaTosca - I'm so sorry about Robyn. Sending you lots of love. Thank you for your kindness and for telling me about your cousin. Someone said to me a while ago that while you never stop feeling sad, your sadness becomes surrounded by more joy. I believe this is so, as most of the time I'm able to feel happy, but I guess it's not a straight line.

Mankymummy, Totalchaos and all you other lovely girls, thank you so much for responding.

Pixle
xxx

[ninedragons]

Any time, my friend. Come back if you need to.

I'm in a different time zone so if you have sleepless nights, the Antipodeans and the Asians are usually around to chat.

[DijonMama]

Hi Pixle,

I don't know if it will ever feel better when you have sad moments and down days - but I think the sad moments become stretched out and you start to recognise the "triggers" for missing him.

I lost my son's twin, Arthur on the day they were born and I know exactly how it is to adore being a parent and be high on the fun and love of your surviving child, whilst missing your lost child with a pain that never totally recedes.

You are a little ahead of me, but like you, I am also about to do more IVF to try to give my son, Stanley a living sibling and it is stirring up so much for me, I am struggling a bit at the moment. Mainly because every time I think of pregnancy and a tiny baby I just want my baby who never opened his eyes.

I don't know if you have contacted them, but I have recently got in touch with tamba, who have a bereavement support group and they have put me in touch with a "befriender" who has lived through similar and talking to her by email and finding out how she coped has helped (her surviving twin is now 4 years old). She says she can identify her "triggers" and I am sure that the IVF has to be the biggest one there is.

Good luck. I hope we can both post of a successful second pregnancy and third child before long.

But on the days it is bad, you just have to live through it. Love to you and thoughts for Oscar.

[missorinoco]

so sorry to hear your story. you haven't let him, or anyone down. he has you, and that is the most important thing to him.
xx

[Pixle333]

Missorinoco, thank you for your kind words xxxx

DijonMama, I am so terribly sorry to hear about Arthur. That juxtaposition of joy because of your survivor and immense pain at the loss of your missing child is something I think you can only truly understand if it's happened to you. My dad talks about us having gone through a 'black veil', and it really does feel like that. Having said that, i've got some amazing friends who've been able to 'go there' with me even though it isn't something they've experienced themselves.

The thing you say about pregnancy and your baby who never opened his eyes really rings true. It's an image that stays with you always, don't you think? I often feel it took me a while to bond with Ezra because my first bonding experiences as a mother were with Oscar, who had died, but who they brought straight to me (Ezra was taken straight to special care, where he stayed for 6 weeks). It was Oscar who I got to know, whose face I studied, who made my heart melt, and I don't think that will ever go away. I also went through a phase of feeling so terribly sad when I saw Ezra sleeping, because he looked so like Oscar. I guess all of these things kick in, too, when I feel like I'm not a good-enough mother to Ezra - I have to fight to remember that I was in a state of trauma, shock and grief for so long and that I did the best I could, I guess.

I wish you SO MUCH luck with your next IVF. You have been through so much, more than anyone can imagine, and you will find the strength and resolve to do IVF again. Sending you much love.

Pixle
xxx

[Pixle333]

I've just read that back and I don't mean it to sound like I'm trying to push people out by saying you can only understand if it's happened to you. That's the last thing I want - you're all so fab. I hope no-one takes this the wrong way
xxx