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Just been diagnosed with TTTS

(111 Posts)
SmellySphinx Thu 11-Oct-18 01:20:23

Hello x

I have twin boys, I'm 22+3 weeks and earlier today I was diagnosed with TTTS I don't know what stage but the notes I have don't make for good reading. One twin is surrounded by too much fluid and the other twin is 'adhered to the uterine wall' and bladder wasn't seen. I have had no signs or symptoms other then one side of my belly appeared a little larger and I mean a little bit, but it didn't appear to be all the time. Also pretty much as soon as I got 21 weeks, I was feeling quite a lot of pressure in my lower abdomen and under my rib. All pretty normal for pregnancy and especially twins I would have thought.

I already knew about ttts as of course as soon as I found out I was having mo/di twins I did all the reading (Googling) I could possibly do...well, you do don't you!

Everything was going excellently until I had my 22 week scan earlier today and the sonographer went quiet after she saw the heartbeats and didn't say much except for the fact there was more fluid around one baby (the donor) and that was pretty much it. I saw the consultant, a different consultant, each time I've seen a consultant it's never the same one. This is the 4th time and is actually the consultant I should have been seeing all along really...she explained it all and we had to go home and sit and wait for a call back as they were trying to sort an appointment for me at Birmingham Queens.

I was so distracted I booked the wrong date for the hotel which tried to charge a £65 cancellation fee hmm which my husband luckily got them to cancel for nothing and we ended up in a different hotel.

So, one bus-train-taxi-takeaway later I'm sat in this 'lovely' hotel. Thankfully the people next door only had very noisy fun once so I don't have to listen to that all night long. My husband and toddler are asleep and well, I can't although I know I need to soon.

Appointment is at 10am tomorrow and I'm trying not to worry too much, I've just been googling medical papers and ttts stories which are a mixed bag of course.

I don't know why I've written it all out, I'm just so apprehensive...and tired :|

loopylou1984 Tue 20-Nov-18 19:21:56

Hope everything's okay. X

babysharkah Wed 21-Nov-18 07:51:52

Hope everything's ok smelly! X

mummyhaschangedhername Sun 25-Nov-18 12:48:52

Hope all is well op.

SmellySphinx Fri 25-Jan-19 23:54:01

Hello everyone following this thread! I'm sorry I didn't continue it but it's been such a long and exhausting journey that hasn't ended yet, I have thought about updating but never actually gotten around to it.

I will go into detail at some point although I think it would be far easier to do so using an online blog type thingy rather than here.

I had the c section at 28+3 both boys were born alive but sadly our smaller twin passed away at 5 days old. I can't really say any more without going on and on and on other than it was fucking awful but not as bad as your imagination would lead you to believe.

You just cope with whatever is thrown at you. Even though when you talk about it, it is just the worst thing that can just live with it.

Our surviving twin is 38 weeks on Sunday and doing well.

That's the very, very short version of our story xx

Yearofthemum Sat 26-Jan-19 00:08:56

That must have been extremely tough for you to deal with. I'm glad your surviving twin is doing so well, though.

cushioncuddle Sat 26-Jan-19 00:14:07

I'm so sorry about your little one. It's wonderful news about your surviving twin. Your strength is incredible thanks

springchicken123 Sat 26-Jan-19 00:34:32

So sorry for your loss OP thanks I've just read your thread from start to finish and what a journey shock glad your surviving twin is doing well. All the best going forward x

mummyhaschangedhername Sat 26-Jan-19 16:28:03

So sorry, but equally congratulations. What a awful place to be in,with the joys of a new baby and the heart loss of losing one. Glad he's doing well. How are you doing?

loopylou1984 Sun 10-Feb-19 21:05:01

I'm so sorry for your loss.

Very glad to hear your survivor is doing well though. I can't imagine being in your position, you sound incredibly strong.

PeakTransedAgain Tue 12-Feb-19 19:47:53

Sphinx I have just read your update. I remember you writing about your family during your pregnancy and being one of many people sending you & your babies strength thanks

I hope your have lots of support thanks

Maraki12 Thu 02-May-19 13:55:24

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

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