Loss of a twin: when to discuss and how

[TreaterAnita]

Brief history: son was an identical twin but they developed severe twin to twin transfusion syndrome and I had to have emergency surgery to separate the interconnecting vessels in the placenta. Twin 1 was the donor twin so tiny and basically shrink wrapped in his own amniotic sac, twin 2 was about twice the size and on pre-surgery scans was basically bombing around in his amniotic fluid swimming pool. The general consensus at the time of surgery was that T1 had poor prospects but T2 would be fine. In fact T2 died within a week but T1 made it through and started to grow again and was born at 32 weeks weighing 2lb 12oz. Just to make life that little bit more heart stopping, he then got incredibly sick with an infection, started to recover, had a TPN line put in which migrated to his lung and nearly drowned in the feed until they realised what was going on. He eventually came home on a smidge of oxygen which he came off pretty quickly, and although he has managed to meet every milestone at just about the last 'normal' point, is basically now a happy, healthy, talkative and bloody cheeky 3yo.

We looked into antenatal twin death a lot when T2 died (I was resting up in bed for a while and had a lot of time on my hands). A lot of the stories related to people who'd been told in much later life and had apparently ascribed a general sense of 'loss' in their lives to this event that they had never known about. Husband and I are both natural born cynics, and we both felt that actually most people, if told they had a lost twin, would feel some 'loss' about that, just by virtue of the fact that life is sometime a bit isolating, so neither of us were convinced that he will actually ever really remember unless we tell him.

My view was that we should just deal with it at a very young age, but husband felt it might be better never to say. I felt that that was quite wrong as someone else (parents, friends) might let it slip (although in reality we are the only people who ever mention T1, I think everyone else is worried about upsetting us).

When I was in hospital after son was born I had a very brief session with a nurse-counsellor there (it was an excellent hospital medically, but given what we went through, the emotional support side was fucking disgraceful) and she basically said that we really ought to tell him, so we made up our minds that we would.

Naively, given that this was pfb, we thought that we could probably do this at about 2, but he's now well over 3 and he would be confused to shit if I started talking about his non-existent brother and I'm sure he'd look at me with his 'mummy's gone a bit mad' face (mostly used when I tell him it's time for nursery and he's playing with his trains) and inform me that he doesn't have a brother.

So, at the end of that (not very brief) history, how long do we wait to tell him and, if anyone has done it, what do we say that a) doesn't upset him, and b) doesn't make him think that we're going to suddenly produce a brother?

[Floralnomad]

A different scenario but I miscarried a twin at 14 weeks in my first pregnancy , we didn't tell our son until a few months ago ( he's 20) and only because it cropped up in conversation when we were watching a TV programme where the same thing happened .it never crossed my mind to tell him when he was small . He's very well adjusted and it's not been mentioned again.

[DavidDecorator]

Don't ever tell him. Some things are better left unknown.
I'm sorry for your loss but think how you would feel if you received this news.

[breatheslowly]

Sorry for your loss and sorry that you havent had any professional support. I haven't got any experience like this, but I think that 3 year olds can take things like this much better than we might anticipate. The world is full of new and unexpected stuff for them and they haven't always got the same emotional response to things like death that older children or adults have. My 3 yo occasionally talks about when she was a baby and also knows about babies in friends' mummies tummies. If it was me, I would casually drop it in next time something related comes up.

[Bonsoir]

I think you can talk about it next time you see a pregnant woman. Talk about her baby growing in her tummy, then talk about when your DS was growing in your tummy, how you felt and how he had a twin brother but he very sadly died before he grew big enough to be born. Be very matter of fact and brief about it.

[notanyanymore]

I think you should either tell him now or tell him when he's much older like a previous posters experience. If it was me I'd rather have always known from early childhood then suddenly find out as I think that would enhance my sense of guilt.

[MaryMotherOfCheeses]

Tell him sooner rather than later, you can throw it in in a conversation about where he came from, what happens with babies etc. Explain it's very rare and that means he's very special.

I had a similar situation and told T1 when he was 2, so he's always known. I've been very matter of fact about it, he's now 13. I struggle to know how he feels about it because he's never been a chatty child, but I think he's just accepted it. Better than finding out now than later.

I read a case study about a girl finding out she had a twin when she was 13. That convinced that it was something my son should just always know about.

[Floralnomad]

notany why do you say it would enhance your sense of guilt ? What would you have to feel guilty about ? These are events that happened prior to you being born and over which you had no control .

[TreaterAnita]

Thanks for all the responses so far.

Flora I don't think our situations are hugely different as T2 died at 20 weeks, although he was 'lost' properly when son was born, as I didn't miscarry him. I'm kind of reassured that your 20yo took it so well, as pretty much everything I read about twins told later in life suggested it was a problem. I guess though that it's those who have issues who are mire vocal.

David I'd probably be a bit upset now if my mum told me that I had a dead twin that she never mentioned, though Flora's post suggests otherwise, but I don't want to have to watch what I say for the rest of my life, and there are things that we have relating to the pregnancy which make it pretty clear that there were 2 babies. I'm not going to get rid of them because they are very sentimental to me but I don't want him finding out that way either. Also, it was his brother, I think he does have a right to know.

Breathe and Bonsoir you've both given me food for thought. We're thinking about trying again next year (IVF, have frozen embryos) so if I get pregnant, that would be ideal for explaining about babies in tummies and take it from there (maybe once baby is born so he doesn't worry about losing the new baby). I can certainly see that you could tell him something very matter of factly at the moment, eg if the cat died or similar, and he would just think 'oh dear' and get on with it, but I worry that a brother that doesn't really exist might be a bit abstract at the moment.

[5madthings]

I would def tell him when babies/preg comes up in convo, short and basic.

Do you have any scan pics with both babies on? That may help?

I a, sorry for your loss and good luck with the off if you go ahead. Xxx

[goodasitgets]

I am a twinless twin and have always known since I was little which I think made it easier to deal with

[TreaterAnita]

I can actually see where the guilt thing could come from, in terms of the survivor guilt idea, which is why I wanted to tell him young, before he can develop that kind of concept.

Mary how did you broach it at 2? At the moment I don't really know how to begin.

[5madthings]

Do you know nayoen who is pregnant or do you have any books about babies? Are there any cartoons or TV program he watches with twins? In firema Sam there are twins?


You just need too work it into everdya normal conversation, easier said than done!

[TreaterAnita]

We don't have any scans with both on unfortunately, they were in a funny position which meant that they had to be scanned separately. I suppose I could show him the 2 different pictures and explain that one was him and one was his brother, he'd like that as he's quite interested in same and different at the moment.

[notanyanymore]

flora I know there would be no sense in feeling guilty and nor do I mean that anyone should. Only that, knowing me, I would. The fact that I had survived and my twin hadn't would make me feel some sense of grief, as you say its beyond anyone's control.
What I would feel guilty about was that my twin was not openly remembered. I would feel as though my survival meant not only had my twin died and I'd survived, but also because of my survival they had to stay secret.

[viperslast]

My situation encompasses far less pain and loss than yours but I thought I'd share, feel free to ignore if it doesn't help.

I lost a twin early on, late enough to know I was expecting two but early enough that losing her didn't have a major impact on my pregnancy iyswim. I didn't really deal with it for a long time as it felt "needy" to be upset with a healthy baby. However I did talk about her to dd from being quite young, probably around 4. It only came up when twins happened into our lives so not many opportunities but the information was always there. It meant that when it came up again when dd was about 12 she already "knew" and it wasn't a shock. Since then she hasn't really asked for details but talks about the practicalities of being a twin knowing she is/was/should be? Never being indulgent just dealing with it as a fact.

I find it both helps me and makes it hard for me. To her it's quite an abstract idea with no real emotion attached. Obviously that's great for her but sometimes I struggle when she is chatting about hating to have to share a birthday or laughing about me dressing them the same.

I would never take it back, I honestly believe even in-utero twins know and have a sense of loss/being incomplete but it's worth being prepared for the fact that something personal and painful to you may be treated with teenage selfishness and lack of compassion at some stage and you will just have to deal with that just like everything else your teen will throw at you. Having said that I would rather deal with my hurt feelings than hers if I had to suddenly reveal this news now.

Dd agrees that she feels something not there, something not quite square iyswim. I would hate to think she had gone her whole childhood feeling that and have had nothing to atrubute it to but equally I know her having the knowledge could have caused the feeling.

In short parenting is tough, whichever way you go you will wonder if you should have gone the other. Imo if the opportunity comes up to be natural go with it, don't engineer things but don't rule them out either.

[ktef]

My instinct would be to tell when your ds is still young, so that it is something he has always known. Both my ds1 and ds2 love hearing their birth story. I've got into bed with them and told their story at bed time, how we (me and dh) felt when we were pregnant, all the names we thought of, the very vague details of going to hospital, and what they were like when they were born and how excited we were to meet them. Could you do something like that going on about all the positives and love, but also mentioning dt?

Having said I would tell early, i should say my ds2 was also very very ill for months after he was born. He has a big scar across his tummy so we had to explain it (and my instinct was to tell early) so we have always mentioned the illness (not a lot, but just when relevant and in passing and in positive simple terms). Interestingly he now (age 5) admits he doesn't like it being talked about as it makes him feel anxious. Does that make me regret mentioning it? No I don't think so, as he is able to tell us how it makes him feel, he is young enough that he still confides in us etc. If we had kept it from him till he was a teenager (not actually possible because of scars) then possibly by then he would never talk about his feelings as by then he will no doubt be a sulking teenager to whom his parents are the last people he would confide in (sob!). Plus I never wanted him to be ashamed (or feel that we were ashamed or felt it was something to be hidden as if it was a bad thing).

Very long and not sure it helps!

[LoopaDaLoopa]

DTD1 was stillborn at 32 weeks. DTD2 is now 4, and we have always talked about it openly. I could never have covered it up, the loss/grief is still a very big part of my life.

[Floralnomad]

Having read the other posts its becoming apparent that when and how you tell seems to depend on how you ,as a person, feel about it. For us it was a traumatic event early on in a traumatic pregnancy and birth ,which included a midwife cockup that left us for a weekend at 18/19 weeks where we thought that our baby was going to be severely deformed and possibly terminated ( 20 yrs ago midwifery services were not what they are now) .We didn't / don't grieve for the lost twin and have always treated our son as one of one ,not one of a pair in which one is missing . We have never hidden the facts and I was fairly sure I had told him before as my 14 yr old dd already knew .As I said my son is 20 ,and very well adjusted and certainly doesn't feel like he is missing anything ( he's very chatty and I get told everything unfortunately!) . I think had my loss been like loopa I would feel very differently than I do , sorry for your loss.

[JugglingFromHereToThere]

I would wait till he's about 6 and asks something about babies and say that babies grow in their Mums tummies but sadly not all the babies that start growing will make it, and in fact that two babies started growing in your tummy but only he grew big enough to be born

I think that would be an honest approach to take and if shared in a part of life/ facts of life way, but also you can say you were sad about it (of course), then I think that will be easiest for him to accept.

I'm sorry for your loss, and hope you can find the best way to talk with DS about it - perhaps when he's a little older ?

[missingink]

Personally I would tell him now, when talking to him about how babies are made. My DD was an IVF pregnancy and we had two embryos put back in, however only she grow. I am not in any way equating this with your experience but we started to talk to my daughter about pregnancy and how babies grow - and specifically how she was made - at the age of 2. As part of this I mentioned about the other embryo.

[missingink]

aah, only one grew, not only she grow.

[Hassled]

It's a horrible situation for you to be in - I'm sorry.

I do think you need to tell him at some stage, if only because he's presumably got a higher than average chance of fathering twins himself if he is one - am I right in thinking that's true? So you could wait until he's an adult with a partner etc - but then it might feel that you've kept this big secret from him.

[missingink]

Hassled, twins can run in families but only from the female line. Identical twins are a random event, fraternal twins are created when a female releases two eggs at a time - and that can be an inherited trait.

[mummyxtwo]

You poor thing, how traumatic for you. I have friends who had twins with twin-twin transfusion syndrome and one nearly died shortly after birth, and the other is severely mentally and physically disabled. Thankfully the twin they nearly lost is now well. What a terrible thing to go through though. I haven't been in your position but I am pretty sure I would be open and honest about it from a young age. Small children cope with difficult things well, and are matter of fact, whereas it is much harder to hear something like this as a teenager or adult as you would understandably brood on this new information that you previously had no idea about. Knowing from a young age and accepting it is a much healthier approach. Ds1 is now 4.10yo and he would understand if I explained this to him. He would have understood over a year ago when I was explaining to him about dd2 being in my tummy. I would go with the brief mention and be matter of fact about it, and don't make it clear that this was a traumatic event that you are still upset about. He will find it harder if he thinks you are upset and sad, whereas if you give the impression of being strong and having coped with it then he will likely follow suit. I would probably say "when you were in my tummy you had a little brother or sister, but they weren't very well and went up to live with Jesus instead of coming to live with us". I'm a Christian, but perhaps you can adapt that if it doesn't fit in with your beliefs. All the best. x