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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 :|

Goostacean Thu 11-Oct-18 01:29:22

I don’t know anything about this, so can’t give any pearls of wisdom, but I just wanted to wish you luck and make sure you got a nice reply smile I’m sure you’re in the best place possible (well, you will be in the morning) to get the information and support you need. Very best of luck.

SmellySphinx Thu 11-Oct-18 01:35:07

Thank you X I appreciate the reply...I did type this out already but it hasn't appeared.

Goostacean Fri 12-Oct-18 02:15:30

How did things go today...? Hope you had as good an experience as can be expected, and got some answers?

SmellySphinx Fri 12-Oct-18 02:55:50

Hello! Thank you for asking I honestly didn't expect any other replies xx I have had the operation now and I'm in hospital. The babies did have twin to twin transfusion it was a very grim outlook at stage 3, and we're definitely still not out of the woods by any stretch of the imagination but they are alive. It's a terrible thing to go through I won't sugar coat it but it was either have the operation or we would have lost both of them. The staff have been absolutely 5* second to none, hands down the best hospital I've ever been in so that in itself is a blessing, I can't praise it enough xx

Ifeelinclined Fri 12-Oct-18 03:26:30

I'm so glad the operation went well. I'll be thinking about you and your sweet boys!

SmellySphinx Fri 12-Oct-18 04:39:12

Thank you also smile xx
I had fluid drained and added and they're still smaller than they should be, I just hope they will hold up until the time is right to come out!! I have another scan tomorrow morning but I can feel them wriggling a lot more now which is comforting xx

DifficultSituation999 Sun 14-Oct-18 12:57:18

Hi, So sorry to hear you are going through this. My twins had a degree of TTTS and the was pregnancy was so stressful. However I now have two very lovely and lovely twin toddlers! I’ve also met lots of other twin parents, some of whom had to undergo laser surgery for TTTS. This technique is improving all the time and I know lots of people who have had good outcomes. I think there’s a Facebook group for TTTS parents and Tamba has a helpline. Do avoid any advice from American sites as they have a very different approach to the treatment of TTTS which is not supported here.

SmellySphinx Sun 14-Oct-18 13:19:47

Hello, thank you for your reply xx yes I have done nothing but read about it since before being diagnosed to be honest but more so now. I have noticed that the US seem to have a very different approach towards it and I've not taken it on board really. I've stuck to mainly reading the UK medical studies that have been published which are few and far between but helpful none the less.

It's a day by day thing I know nothing is guaranteed but all I can say and hope for is that things are good today, they're both wriggling and that's a plus.

I've put off joining any ttts groups for now at least until I know more about our own situation. I'm already anxious enough without reading other people's stories...if you know what I mean confused xx We have a follow up scan on Tuesday and weekly there after as well as an MRI in 5 weeks. Fingers, toes, legs, eyes, arms, everything crossible-crossed for a good outcome! smile

SmellySphinx Sun 14-Oct-18 13:27:36

Just to add, we obviously had the scan after the surgery and the following morning and all seemed well. The smaller recipient twin has a marginal cord insert and we also had both of our bloods taken for an in depth test to rule out any genetic abnormalities. My notes on the surgery says it was "without complications" and both babies have no obvious physical deformities despite them being small. I'm not worried about them being small if I'm honest, well at least it doesn't concern me at the moment as the weights of twins varies so much! It's a wait and see approach as with everything else.

I'm resting as much as possible and eating healthy stuff regularly, drinking lots of water, juice and milk. I'll keep updating the thread as we go incase anyone else is reading, it might be helpful! X

Goostacean Wed 17-Oct-18 18:15:32

Hi again, so pleased you hear the standard of care was top-notch and things have gone well. Sounds like a really difficult time. How was the scan yesterday? Got everything crossed for you!

SmellySphinx Wed 17-Oct-18 19:06:12

Hello xx

Oh it really was!

Things seem to be going well, after lots and lots of wriggling
and patience... bladders and hearts checked and normal, smaller twin 2 brain function normal. Twin 1 was being a really awkward baby with his head stuck in such a way it was difficult for the consultant to scan his brain but she did pick up a satisfactory doppler result after i went for a walk thankfully, although he didn't feel like behaving and didn't move much grin

The liquer volumes are still unequal but hopefully they should equalize I really, really hope they do. They seem to keep mixing up which is twin 1 and 2 although obviously twin 2, as has always been the case is smaller, they're putting in my notes twin 1's symptoms sometimes! confused

I'm worried about a reoccurance of ttts, I think there is a 12% chance according to records which don't really mean much.

I will of course have the operation again if I have to but it will stress me (and all of us) out no end with the worry and cost and upheaval again but needs must!

I keep thinking how did I miss it happening?! but honestly although it happened relatively quickly it was also the same symptoms of any pregnancy. We're just lucky I had a scan anyway the day we did otherwise the outcome would be very different. The consultant literally said if we wait until tomorrow the smaller twin will die sad

Anyway! It's just passing thoughts I'm not focusing on too much right now, just with the chance of it happening again... I've bought a measuring tape lol it's not a foolproof way of monitoring it but along with the pressure pains, lopsided belly and reduced movements (that I didn't see as anything too bad due to space constraints and they were still moving) I will hopefully see the signs. Plus weekly scans from now on.

Sorry, rambling!
So, fingers still crossed everything stays good Xxx

loopylou1984 Sun 21-Oct-18 18:12:56

So glad everything has gone as well as it can so far.

Just to give you a positive story my girls were diagnosed at 22+3, had laser and fluid reduction at 22+4 and they held on until planned c-sec at 34 weeks.

Don't beat yourself up about not knowing, I had no idea.... and to be honest neither did my maternity triage. I went in the day before with pain under my ribs and they sent me away with medication for heart burn. Didn't scan me or even listen to babies heart beats. Thank goodness we had a planned scan the next day.

SmellySphinx Sun 21-Oct-18 18:38:20

Hi xx Oh how stressful! I'm glad you had a good outcome xx

The only reason they caught it with us is because of the planned scan, it's so scary!

I had a bit of a wobble on Wednesday night/Thursday afternoon actually because they weren't moving as vigorously as before, all triage did was listen to the heartbeats, test my pee and feel my abdomen. They said they don't monitor or scan anymore until 26 weeks they would only perform a scan if they couldn't find the heartbeats or it proves difficult to locate one of them. I have to say this was quite unsettling really as the only way they could know that anything was really going wrong is through a scan in my case. You can't exactly go in demanding anything, it wasn't busy though when I went in and to be fair I do have a scan on Tuesday. I think they need to do more scans between 16-22 weeks with twins as twice a month isn't enough to catch this happening unless you're lucky. Considering the symptoms aren't exactly as visible as they make out. It's probably asking too much of the busy NHS though, I don't know...

They did of course start to wriggle furiously AFTER we got home lol

What did your babies weigh if you don't mind me asking? Xx

loopylou1984 Sun 21-Oct-18 19:46:29

I think the smaller hospitals are just not very well trained in complications like ttts or even in twin pregnancies in general. There needs to be more awareness.

If you think there is a chance anything is wrong then don't be afraid to go in and demand a scan. Give them the figures and percentages, talk about how quickly things can change with ttts - basically make so much fuss that they have to scan you. Maybe in single pregnancies they can have a blanket 'we don't scan before 26 weeks' rule - but not in ID twins!

They were 3lb5 and 3lb9. My donor was actually the heavier baby in the end, despite being 25% smaller at the point of laser.

SmellySphinx Sun 21-Oct-18 20:48:14

Yes true, I did tell them when I rang that I was high risk and that the consultant told me to ring triage if I experienced reduced movements. I did see a consultant before I left but he didn't seem concerned, he said we're not ignoring it but there is nothing concerning.

I'm getting scans from the consultant who has experience with twins and TTTS on Tuesday as I did last Tuesday, I think I will actually ask her to write in my notes to scan if I have to go again, it would put my mind at rest. I'm certainly not a hospital botherer lol but in my case I think things need to be taken a little more seriously. I have had 3 children, all singles and I only ever showed up to be monitored when I was instructed to for high blood pressure after it was taken by my midwife. On that note, I don't know if your experience was the same but I don't see the midwife any more and haven't since 12 weeks she said there really is no point as you (I) will have regular appointments. She said I can always see her if need be though.

Throughout (excluding my time at Birmingham) I've been weighed twice and had my wee tested 3 times and I had to ask for my flu shot at 20 weeks rather than it being offered to me confused. There has been less consistency in this pregnancy than my others to be honest.

Donor baby is the larger of the two in my case I don't know if that will change however the size difference between their bellies on the scans is quite obvious.

Can I also ask did your babies spend time in the NICU and were you able to use your milk or feed them? Don't have to answer if you don't feel comfortable of course xx

loopylou1984 Sun 21-Oct-18 21:53:33

3 weeks in NICU, only really to grow and to let them develop their suck reflex. They were tube fed for about 2 weeks and then we started on bottles (but they were very supportive of those wanting to breast feed too, I was just desperate to get home and bottles tend to be quicker).
I expressed from day one (in fact I expressed colostrum before they were born and froze it) and they tube fed them with my milk exclusively when there was enough, and topped up with preemie formula when there wasn't.

SmellySphinx Sun 21-Oct-18 22:54:08

That's really very informative thank you so much xx

SmellySphinx Tue 23-Oct-18 20:30:07

Update after today's scan...

Got a call from a midwife at Birmingham Queens, all of the genetic tests we had are clear and there are no problems there. We went to hospital for the growth scan and both babies have caught up with each other and are growing.

However, twin 2, previously the smaller recipient twin is showing signs of anaemia, the blood flow is faster. Early stages of TAPS I'm guessing. So it's scans twice a week from now on hoping that the condition doesn't progress further or faster, if so then it's back to Birmingham for Me, logistical and financial pain in the buttocks!!

Friday morning is my next scan!

Goostacean Tue 23-Oct-18 23:50:32

Glad to hear at least a partially positive update. Best of luck with the next scan, hopefully the anaemia won’t progress. Please do keep updating! Wishing you and the bump(s!) well smile

notapizzaeater Wed 24-Oct-18 00:04:17

Good luck with the next scan x

loopylou1984 Wed 24-Oct-18 08:02:54

Great news that the size discrepancy has evened out. How are the fluid levels?

It's unusual (not impossible) for the recipient to be bigger and be the anaemic one - are you sure that's the right way round? Could well be, but not the usual route TTTS takes.

Good luck for Friday. I'm glad they're scanning you regularly.

Any pain, tightness, rapid growth of bump, reduced or hugely increased movements then get yourself to the hospital and don't leave until you're scanned.

You're over 24 weeks now aren't you?

SmellySphinx Wed 24-Oct-18 16:30:36

Cheers everyone Xxx wink

I hope they don't swap places as far as TTTS is concerned confused

The previously smaller twin 2 was the recipient when I had ttts this is the early stages of suspected TAPS as yes the fluid levels have more or less levelled out. Twin 1, 50mm. Twin 2, 72mm (thankfully) I'm 24 weeks 3 days today X

They're a few grams out from each other Twin 1 (maternal right) breech is now 529g and twin 2 (maternal left) cephalic 533g. Twin two has been packing on the grams lol
The consultant has written on my notes "Taps, ? Recurring TTTS" but as TAPS is a form of TTTS I'm assuming that's what it means. Either way I'll find out at the next scan. TAPS is the lesser of two evils I suppose as it is a slower progression, or even better, it doesn't progress at all. I'm just glad I'm being closely monitored now.

I'll keep posting updates xxx

moolady1977 Wed 24-Oct-18 16:39:02

I will be following your updates and wishing you all the best, I was a ttts baby over 40years ago

SmellySphinx Wed 24-Oct-18 17:02:11

Thank you xx

I had no idea it was even possible for me to become pregnant with twins lol

The layperson (or me) would just assume it's IVF or family related. Well wasn't I wrong, wrong and wrong again!! Not to mention all the complications that can happen. I only knew basics such as the likelihood of a premature birth. There is just so little information on twins in general, it's surprising to say the least.

The only connection is that my mother in law had twins however they have a different father to my husband.

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