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Bereavement

Surviving Twins

86 replies

RTKangaMummy · 22/02/2005 22:46

Perhaps we should chat here





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throckenholt · 19/05/2005 08:09

I think it is best to be open. On another board I read of a lady who found out she was a surviving twin when she was in her 30's - she was devestated that she was never told (particulary as by then she was a twin mum herself). She finally came to the view that her mum must have suffered so much by not being able to talk about her twin, and must have been very frightened when she found out her daughter was also having twins.

Twinklea - it can't possibly be your fault one of your id twins didn't form properly - don't feel guilty about it. Am I right in thinking spina bifeda is when then spinal cord doesn't seal properly at then bottom ? I think that is one of those things that happens in the first few days/weeks - long before you had any idea that you were pregnant.

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swedishmum · 19/05/2005 02:41

Sorry to invade but I also think it's right to be open and honest from the start. Our story in brief - at 20wk scan was told it was a twin pregnancy, but hernia with twin 2. Referred to Kings (Kypros Nikolaides) who diagnosed left heart hypoplasty in dt2 - then on to guy's (Ulrika's doc - Dr Sharland). Was offered selective foeticide by kings, but decided to carry them both to term. I'm very glad I did. Octavia lived just 23 hours.
Em knows all about her sister but it's not a big deal in our lives. She just knows she can look through the memory box when she wants to. Dh had a bangle made for me with 2 bangles linked, each engraved. I always wear it.
The longer children don't know, the more left out they eventually feel. Good luck to you - I'm sure the birth of your new baby brought it home to you - it certainly did for me. And special wishes for all of our much loved babies.
xx

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RTKangaMummy · 18/05/2005 21:40

Twinklea

I believe that you have done the right thing in telling Mya about Celeste.

We have done exactly the same with DT2 telling him all about DT1

Both of their photos are on the shelf next to each other just after birth.

We talk about DT1 quite alot and are always open to talk about him when DT2 raises the subject.

They are identical too

Their 10th Birthday is at end of MAY

So end of April throughout May and into June is a complete nightmare for us especially me.

We got our SANDS wristbands today and I am wearing 2 one for me and one for DT1 and DT2 said shouldn't he wear 2 ie for him to wear the one that belongs to DT1 I said that was ok

So I think we will both wear 2 IYSWIM

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Twinklea · 18/05/2005 21:20

Hi all, i've been looking for people like me for over 3 years, just to share some thoughts with. I have 4 children now, 9,4,3,6wks. The oldest 3 are girls, youngest is a boy. Mya, my 3yr old, is a surviving identical twin. Although her situation doesnt come about often (so i've been told), there are obviously many children and people who are surviving twins.
I was told at 16 weeks that i was having identical twins. Then i was told at 21 weeks that 1 was developing seemingly normally, while the other had severe spina bifida and hydrocephalus. To this day nobody can really explain why celeste was so damaged and mya only has a birthmark. I have to say, silly as it sounds, we believe celeste beat the odds to get here so that her sister survived, because with identicals if 1 dies in utero, the other will if its not delivered very soon. Celeste wasnt meant to survive birth, but she did. I was given an emergency c-section at 36 weeks. My little angel went through so much that in the end we were told she'd never live beyond 1yr, and if she was lucky to go that long, she'd be kept alive by machines. I actually had a paediatrician tell me it was my fault she was damaged and that i should have selectively terminated her and risked losing mya too. Needless to say hes never been allowed to treat any of my other children.
It still hurts, and the guilt still eats me. Mya has always known about her twin. She often wakes up telling me her angel celeste came in the night and played with her, or when shes been ill she says celeste has been hugging her. We dont mock her, because its comforting to know shes got a very special bond with her twin. Shes a beautiful, happy little girl, despite now having to grow up with a whole half of her missing, but i think we are so close because we share the loss more than the rest of the family do.
We have lots of photos in an album, some clothes, and a 10 minute video of me holding them both. Losing a child is always hard, but i am blessed with mya. If i feel down, she knows and she'll make me smile. Her birthday is hard for me, and i'm usually down from then until just after the anniversary of celeste passing. She was 7 weeks 2 days and 16 hours old. in over 3 years i havent been able to visit the garden of rememberance because i found it so hard to leave when we had her funeral. This year nobody remembered her except me, and the stark reality hit me that its always going to be like that. Life does go on, and i have had another child since, but i'll always miss celeste, and always feel guilty that shes not here. I'm very lucky that i have mya though, and being identical means i'll always know what celeste would look like if she was here with us.

I have had comments from people who think it was wrong of me to tell mya about celeste and that i should have waited for her to say something before i told her. Its purely an individual thing i think. celeste isnt a secret in our house. we talk about her all the time, say we love her and miss her, and often look at photos together. I think mya is a more confident and happy child for having the freedom to talk like this.
I think theres something in the theory that twins have a unique bond. Its there even when they are separated in some way.
Sweet dreams to my precious angel, who is always in my heart.
Take care all, Love twink xx

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swedishmum · 22/04/2005 00:12

Just read your question, lisalisa. If anything it's the opposite with Em - it's always been almost as though she has the personality and energy of both of them. She's 9 now, and fantastic, very intuitive and with great empathy. Also exhausting because she's bright, but I wouldn't change her for anything.

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lisalisa · 12/04/2005 13:34

Message withdrawn

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swedishmum · 02/04/2005 21:59

We couldn't think of anywhere for Octavia's ashes so they are still in a special box in the safe. They are the one thing that I worry about when we're away. Anything else can be replaced.
Do write - anything and everything - it's so cathartic. My book has footprints, hair, ramblings, eloquent bits, funny bits... I know that Emma (surviving twin) finds it important, even though I really wrote it for myself. And your circumstances are so much more heartrending than mine - in many ways we had most of our mourning time before the birth (although the mixed feeling of giving birth when you know one baby wil die is a whole other story, especially as midwife on way in says "Oh you're the twin lady, how lovely." )

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RTMTMML · 02/04/2005 21:36

then wait angel. It doesn't need to be done now. You can write down the bits that you think you'll forget as and when. It doesn't all have to be now. Whenever I look at my DTs I think of Bo and Elijah. You and your family live in my heart. Take the time that you need darling. {{{{{{{{{{{hugs and kisses}}}}}}}}}}}}}}

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pixiefish · 02/04/2005 21:35

There's no need for you to do anything with the ashes until you're ready bubble. You can keep them in the house forever if you want to. My friend died when we were 10 and his parents have kept his ashes in the house for over 25 years

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bubble99 · 02/04/2005 21:32

I'm compiling a baby book for Elijah as I did with my other two DS's. Hospital ID bands, photos etc. With my other two, the first page of their book has an US picture. All of my scan pictures are obviously of Bo and Elijah.It really hit me today how close they were,that the first thing they would have seen when they opened their eyes in the womb was each other. We still have Bo's ashes, we want to scatter them but I can't bear the thought of him being out in the cold somewhere on his own. I can't make sense of my feelings at the moment. I'd expected to have a constant level of sadness but I seem to veer between feeling positive about the future and even happy and then so hurt all over again. I will make up a book for Bo and a little box for his lock of hair and footprints but at the moment I can't even bring myself to look at them.

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swedishmum · 01/04/2005 00:30

I have a box (which my daughter, twin1, calls hers. It's in my wardrobe for her to look at when she wants to. It's been 9 years now and she doesn't often ask, but it's still very important to her that she's a twin - makes her special. It was a horrible, horrible phase of our lives but we lived through it and I must be honest and say I didn't even cry this year on the day Octavia died (I feel lucky for her sister that she died the next day, therefore the two days are separate for us. I know we're luckier than many - we knew from 20 weeks that there was a problem, but we can never forget passing her from my husband to myself while she took her last breaths, wrapped up in a blanket like a tiny doll. And when dd nearly died of severe bronchiolitis 3 weeks later I thought I would never relax and have fun with my children again. But I do - OK, I still hate to plan ahead in case something goes wrong, but I'm happier than I could have imagined being and I don't feel guilty about it. I have a special private place in my heart for Octavia, and a special book I've written all my thoughts in.

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RTKangaMummy · 23/03/2005 12:14

That sounds lovely elliemae

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elliemae · 23/03/2005 12:11

hi,

thanks for the advice ,i will keep the picture up ,and tell my dd as soon as she can understand.We have a little plack in the garden which has some lettering about dd on it!Some little fairys and things also,she has just started walking and with spring here im sure she will be investigating it!! <br /> <br /> Its nice to have a memorial in the garden as we dont get much chance to get to the grave as it`s out of town.

Maybe BUBBLE it might be nice for you to have something simaler .Thinking of you by the way [hug]

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gingerbear · 22/03/2005 00:03

Oh Bubble.
Thinking of you.

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Arabica · 21/03/2005 23:58

love to you and family, Bubble.

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RTKangaMummy · 21/03/2005 21:25

Bubble and family cyberhugs{{{{{{{{{}}}}}}}}}

The little white coffins are just so tiny aren't they

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GRMUM · 21/03/2005 21:06

Bubble and family

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elliemae · 21/03/2005 21:03

So sorry bubble .

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soapbox · 21/03/2005 21:01

What a sad sad day for you and your family Bubble

You are all in my thoughts, as is Bo!

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WideWebWitch · 21/03/2005 20:53

Thinking of you bubble x

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JanH · 21/03/2005 20:49

Ohhhhhhh, bubble

I don't know how you can be so reasonable after all that's happened. Your boys (all 4) have wonderful parents. XXXX

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Hulababy · 21/03/2005 20:48

Bubble; Thinking of you.

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motherinferior · 21/03/2005 20:45

Bubble,
I've just looked in on this thread. So it was today. I am so sorry.
xxxxxx

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MunchedTooManyMarsLady · 21/03/2005 20:44

{{{{{{{{{{{{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}}}}}}}}}}}} bubble.

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pixiefish · 21/03/2005 20:44

bubble

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