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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 Wed 24-Oct-18 18:03:16

Identical twins are just a fluke. Not genetic at all and not the kind of twins you usually get from IVF...although my ID girls were in fact IVF!

Non identical twins can be genetic but only down the maternal line. So if your mum, maternal grandma, maternal great grandmother etc was a twin then you may also have twins. If you dad for example was a twin then that doesn't affect your chances of having them. The genetic factor is the predisposition to release 2 or more eggs at a time!

And I've just realised how much I've learnt since having twins 😂

SmellySphinx Wed 24-Oct-18 18:51:59

Haha I certainly know a lot more than I did, even some of the midwives and sonographers know very little.

I started seeing twins and twin things everywhere! Ok, they're not there any more than before but like with anything you notice it more if it's happening to you. I suddenly noticed twins in the street, at the supermarket, on TV!

Just randomly popping up as soon as I found out.

DifficultSituation999 Wed 24-Oct-18 18:59:01

Hi Smelly, glad things are going relatively well.

With regards to breastfeeding, yes you most definitely can! Join a Facebook group called “breastfeeding twins and triplets UK”, loads of amazing advice, also lots of preemie/TTTS mums in there.

Mine were 29 weekers and were in NICU for 3 months (my smaller one was very poorly). I expressed and tube fed at first and then breastfed fully once we came home. Once established breastfeeding was a lot easier than bottle feeding (for me personally).

Hope your twins keep well & that you won’t need another surgery x

SmellySphinx Sun 28-Oct-18 18:59:37

Hiya xx Awww I can't imagine how stressful that was for you and your family, thank you for sharing. Its really good to know, I do really want to breastfeed xx

I will join some more group's on Facebook soon definitely as there just isn't much information on Google about TAPS at all, well not as much as I would like anyway.

Just to update, sorry kept remembering then forgetting! The scan on Friday showed things are getting worse however it isn't danger zone as yet, I suppose we're just delaying the inevitable. Another scan tomorrow at 11 xx

SmellySphinx Sun 28-Oct-18 19:05:06

Just to add they are so damn wriggly!!!! That's an absolute plus obviously but my oh my it's starting to make me feel sick today. I don't usually and haven't suffered any (so called) morning sickness with any of my pregnancies, just slight nausea which is usually always down to the iron. If I happen to eat something with extra iron it messes with my stomach, ugh! I'm already taking Spatone and have been for months which is a God send as it doesn't make me feel like crap! These two wrigglers don't help though grin

loopylou1984 Sun 28-Oct-18 19:31:25

Sorry to hear it's getting worse, best of luck for tomorrow's scan. Xx

SmellySphinx Sun 28-Oct-18 19:42:52

Thanks Sammy, I'll update tomorrow xx

SmellySphinx Mon 29-Oct-18 14:22:13

Some slightly good news! Things do seem to have stabilised somewhat as the readings are similar to the last scan, fluids are even better than last time, cord and brain blood flows are looking normal. Consultant talked about steroids with Birmingham consultant but said its best to wait for now and we're working towards the markers of 28, 30 then 32 weeks. Seeing as things are looking a little better my next scan isn't until Friday now.

Come on Babies, you can do this!!!! grin

loopylou1984 Mon 29-Oct-18 19:55:04

That's great news 

ileclerc Wed 31-Oct-18 12:16:05

Hello,

Glad you had some positive news today.

Just to add another positive story, my TTTS babies are 8 now, had laser at 19 weeks and they were delivered at 31+3 via EMCS. Were booked in for 34 weeks but didnt quite make it.

They were 3lb1 and 3lb 3 (donor was heaviest at birth here too), we were in hospital until 37 weeks. They had no issues apart from growing and putting on some weight.

I remember it being a complete roller coaster of emotions before they were born - good scans / bad scans / good news / bad news. Hang in there.

Thinking of you

SmellySphinx Wed 31-Oct-18 12:34:54

Hello xx thanks for sharing, I must say it is a relief each time I do happen to hear of a good news story from someone especially if the circumstances are similar to mine xx

Did you actually go into labour before the emc or was it a matter of better out than in? X

Ifeelinclined Fri 02-Nov-18 03:03:04

I'm so glad that you got some good news! I've been thinking about you and you sweet twins. Best of luck!

loopylou1984 Fri 02-Nov-18 09:00:27

Good luck for your scan today

SmellySphinx Fri 02-Nov-18 15:10:02

Update*

Readings are on the rise again, slowly but surely confused feeling a little more scared now as im I'm 26 weeks on Sunday and closer to the 28 weeks mark where my consultant said they tend to look at delivery as opposed to treating in utero should it reach the it drops stage.

I know nothing is certain obviously but it's on my mind.

Deep down I knew things wouldn't stabilise fully anyway but you can always hope!

Results of the scans faxed to Birmingham, waiting for a call back from the consultant to see what the next step is. It'll probably be a wait and see approach as although the readings have worsened the cord flow and fluid levels are fine. No fluid around babies hearts or organs. Next scan is on Monday, thank you for the support xx

I've tried to join a group on Facebook, I emailed them as it suggested on their group that they have a pregnancy group which they add you to. I got a message from admin asking for more information so I told them the situation and haven't heard anything back since. Sometimes feel like I'm on the outside looking in on all these twin group's because most talk about twins who are already born, some very sad and not so comforting stories sad.

Tamba is Ok I suppose but again the website to me personally isn't telling me anything I don't already know. Not much about taps that I can see. I don't fancy ringing up the helpline as I don't really 'do' phone calls, I prefer to browse and read.

Anyway, positives out weigh the negatives right now so shouldn't focus on those.

Anyone have a crystal ball handy?! grin

SmellySphinx Fri 02-Nov-18 15:13:05

Stupid stupid STUPID autocorrect.

Should say...
*Readings are on the rise again, slowly but surely. Feeling a little more scared now as I'm 26 weeks on Sunday and closer to the 28 weeks mark where my consultant said they tend to look at delivery as opposed to treating in utero should it reach the hydrops stage*

SmellySphinx Fri 02-Nov-18 15:17:55

Oh Also, not important really but it was a little weird to me... my bump suddenly reduced a little two days ago, nothing changed didn't feel off, nothing leaking they were wriggling as normal. Found out today that twin one had flipped and they're now both cephalic and spooning, still separated by the membrane of course but also very cute!

loopylou1984 Fri 02-Nov-18 20:17:17

If this isn't the one you've tried to join then I recommend. There are so many knowledgeable ladies on there and I'm sure several people would be able to offer support for your specific situation.

There are some sad and scary stories on there but you are asked to start your own post asking advice so there is no need to read the others if you don't want to.

SmellySphinx Fri 02-Nov-18 20:38:33

Thanks again Sammy xx Yes I think that is the one I tried to join. The admins are either not super active or because I don't have much on my FB (I left, rejoined, left etc) and don't have pictures of me or children openly, it's all private. No human pics on my profile either perhaps they're being extra cautious. I did write enough in the message to show I'm not a weirdo or messing around. We'll see I suppose! All the others seem to be American x

SmellySphinx Fri 02-Nov-18 20:49:21

Just checked again, my Facebook was playing up a minute ago. The one I tried to join was TTTS foundation TTTS survivors group but you had to message them to be added to the pregnancy group

SmellySphinx Fri 02-Nov-18 20:54:01

Ok, I've requested to join that group thanks. I was confusing the two haha

loopylou1984 Sat 03-Nov-18 10:54:21

They're usually quite active so hopefully will add you quickly

SmellySphinx Mon 05-Nov-18 18:40:58

I'm part of the group now xx I wrote a huge introduction as asked but it hasn't been posted yet. Perhaps it was too long lol not sure confused Not many mentions of TAPS well, not very many. A few people had the taps later on in pregnancy. It is comforting to finally be part of a group of other people who understand however much I'm sure we all wish it didn't even exist.
Anyway, today's scan including growth scan went quite well. I did have to wait an hour tonget scanned. A male sonographer grabbed my notes thinking I was just in for regular scanning and not realising my history, he looked terrified and soon changed his mind about scanning me. He was so apologetic I did feel so sorry for him haha.

Both babies measurements almost identical. Fluids, cord flow good brains and hearts looking healthy, no signs of fluid around the organs. It's just the damn MCA blood flow readings that are off kilter.

The consultant said things are stable, by which I've now come to understand she means aren't 'critical' rather than unchanged. Perhaps 'stable' is the wrong word to use!? Babies have put on around 40oz so thankfully they are growing. She also mentioned the femur measurement has dipped slightly but that's not concerning right now. Everything faxed onto Birmingham and they are conversing. Next scan is Friday! I had to double check wether or not I would still be having blood thinning injections at 28 weeks as a previous consultant mentioned this once (I'd not heard of this beforehand) as I have 3 risk factors. I will be having them, not something to look forward to but needs must as usual!

The cephalic positioning didn't last long though, I didn't think it would. I'm guessing they enjoy kicking each other in the face lol

SmellySphinx Mon 05-Nov-18 18:42:57

Sorry really should have proof read that post, it's a little jumbled

comradelouise Mon 05-Nov-18 21:42:47

Hi SmellySphinx, glad to hear the scans are going well. Just wanted to reassure you the blood thinning injections are nothing to worry about... I had them as my daughter was born at 34 weeks (3lb11). I'm really squeamish with needles and pain and found them fine so I'm sure you will too!

Hang in there, just think of the story you can tell these little ones some day of how they came to be born! xx

SmellySphinx Mon 05-Nov-18 22:03:28

Hiya smile Oh I'm actually well used to be pricked and prodded and squashed and poked now to be honest. I HATED having bloods taken with my first and second pregnancies but I'm getting quite bloody used to it now, not pleasurable of course.

I will be having strong words with these two babies!!

Thank you for letting me know though, all I kept reading was how painful they are confused I don't mind really, you do anything don't you as long as it helps xxx

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