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Multiple births

TTTS - positive stories please

9 replies

Kiki275 · 10/03/2020 19:41

Hi all,

I've just been diagnosed with stage 2/early stage 3 TTTS in my MCDA twins. Made the awful mistake of googling and the percentages are freaking me out! Please someone tell me that I'm in amazing hands and it's not as bad as I'm reading x

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Kiki275 · 10/03/2020 21:35

Bumping (hopefully) x

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Milltown2 · 05/04/2020 13:59

Hi there- we had bad stage 1, and went on immediate bed rest and high protein diet with ensure milkshakes. They pulled through without intervention - I definitely think the diet helped and resting as much as possible! Good luck

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Kiki275 · 07/04/2020 16:17

Thank you Milltown. It wasn't a happy ending for us but we were unlucky in our circumstances. I'm so pleased yours was and I'd like to reassure anyone else suffering similarly that the care and assistance we had were 2nd to none x

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Cabra82 · 07/04/2020 17:17

Hi Kiki,
I’m so sorry for your loss. TTTS is awful- it really makes you feel so powerless, and Im so sorry that you had to go through it but I am glad you had good care and support during this difficult time- do take care of yourself. Sending virtual hug.

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Cabra82 · 07/04/2020 17:19

By the way i just changed my username so it is the same person replying to you.

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HelpIHaveNothingToWear · 07/04/2020 17:22

Hi. Congrats on your pregnancy. Do not google!!! The stats are not only terrifying but also outdated. This incredible area of medicine is moving so fast. We had TTTS complicated by sIUGR too. Rough ride and prem birth but healthy toddlers now 2. Save your questions for your consultant (where are you based?). You should have regular scans. The twin pregnancy was the worst time of my life but we got through it and I know many other TTTS survivors. Hang in there!

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Doublebubblebubble · 07/04/2020 17:39

Please stop googling.

I have changed my username but I asked an identical question back in 2012.

Please please stop googling.

Try to focus on the things that you can. Feel your babies as much as you can.

You're probably already aware but you'll likely not see a midwife again. It'll be consultants and professors from here on out. If you want to DM me you can.

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Kiki275 · 07/04/2020 20:15

Thank you everyone. As mentioned unfortunately it didn't work out for us. We went for laser surgery. My amniotic fluids were clouded through prior bleeds, making visibility difficult. My waters broke at the end of the procedure and my boys were born sleeping on 18th March. Every team involved were amazing and we cannot fault the care received x

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HelpIHaveNothingToWear · 08/04/2020 06:43

Oh my goodness I am so sorry for your loss. I am also very sorry for my insensitive post (I misread the thread). Take care of yourself OP xxx

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