Twin-Twin Transfusion Syndrome

[MrsStevo]

Hi!

I wanted to share my experience of the most horrendous week of my life and find out if there is anyone else out there in the same / a similar boat?

My MCDA (identical) twins were diagnosed as having Twin-Twin Transfusion Syndrome (TTTS) at my 20 week scan last Tuesday (5th April). The doctor established this because one twin was smaller than the other, had virtually no amniotic fluid around it and was stuck to the wall of my uterus, not moving. It had a heartbeat but no bladder could be seen (as no fluid for it to drink / urinate). The other baby was swimming around in waaaaay too much amniotic fluid. The doctor thought I was at stage III of the condition (Stage V being babies have already died) so very serious.

So, I was referred to Birmingham Women's Hospital (I live in Lincoln) and had an appointment there on Wednesday afternoon. The (amazing) consultant - Mr. Bill Martin - scanned me and confirmed TTTS. He said he thought I was actually only stage II but basically said the only chance babies had was for me to have Fetoscopic Laser Ablation Surgery - keyhole surgery where they go into the sac that the bigger baby is in and laser / cut off some of the blood vessels in the placenta that the babies share so both babies have their own half. Odds are 40% chance of both babies surviving and 80% of one surviving. Plus added risk of early labour / waters breaking, infection etc.

Long story short, I was admitted to Birmingham Hosp on Wed PM and had the surgery at about 9am on Thursday. I was terrified - had to have spinal anaesthetic, be catheterised, wear a surgical gown and it was done in a big operating theatre with literally 15-20 people in it. However, my consultant was just amazing - so re-assuring and acted as though it was something he did everyday. He and his colleague were even chatting away about holidays whilst they lasered away.

After the surgery we (DH and I) had to wait for 6 hours before they would scan me again to see if the babies had survived the surgery. At the time, that was the longest 6 hours of my life. We had the scan at about 5pm and both babies were alive - the doctor said they looked healthy and it was the best outcome they could hope for. However, they also said that the next week is a crucial time and, if babies survive the week, then that is really good and indicates they both have a good chance of making it.

So. Here I am 4 days post-surgery with 43 hours until my next scan (they're doing it a day earlier in Lincoln so I can see my consultant there). I feel completely lost and totally in limbo. I don't know what to do with myself (aside from rest, feet up etc etc) but am just trying to stay sane. I'm trying my hardest to keep myself away from Dr. Google so I don't freak myself out by the statistics.

The biggest things I worried about right now:
Will both babies survive? I can't imagine my life without having twins in it now -these will be our first babies, having had a miscarriage last year.
IF they do survive, will they have any neurological damage as a result of surgery - cerebral palsy is a risk. How will we cope if they do?
I'm vegetarian - should I be on protein suppliements to promote healing / good blood quality etc?
Is there ANYTHING I can do to make the odds better?!

Oh. It is just a horrible time. My DH went back to work today (although he wants to be at home with me as much as I want him to be) so I'm alone with just my overactive mind (and a pesky cat) for company.

I wanted to write about this experience on here in case anyone has any pearls of wisdom or wants to share their experience of this horrible condition. Or, if anyone on here happens to be an expert in this condition, perhaps they can pump me full of optimism with a bunch of statistics that everything will be ok?

Thanks for taking the time to read / listen.

hi Cake glad all good with you - hope tomorrow goes well for you and you have good growth results with your twins!

Keep me posted anyway! will be thinking of you :)

X

Hi all, (Hi Twinnies),

My scan today went okay. Things are unchanged in that one baby has quite a lot of fluid around it and the other has very little. However, dopplers are fine and so was growth. I couldn't understand that if the new donor twin had enough blood flow to grow normally, and had a visibly full bladder, why does she have so little fluid around her, but the consultant didn't know either. So we have to continue to monitor week by week for any changes.

The hot weather has really been taking it out of me!

Silver and MrsStevo wishing you and your girls all great health, don't forget to keep us posted.

Twinnies how are you doing? When do you have your scans, is it Tuesdays?

Hi Cake

Yes it is strange isn't it - but i guess if bladder is there and growth is good it's ok for now? At least with weekly monitoring if there is any drastic change it will be picked up upon immediately. Just realised you are nearly at week 28 - the golden number! :)

We're doing fine, in Ireland we're not suffering from hot weather, it's quite humid and only just about 20/21 degrees so can't complain about the heat - i'd actually love abit more of it! :)

I'm doing ok anyway, just plodding along with my usual bits and bobs during the week.We'll see how we go at next appointment - I'm in every Tuesday. Fingers crossed twin 1 has grown a little faster and might catch up somewhat, but i how my doubts. She has been growing about 50% slower than twin 2 if you take the last few growth measurements into consideration. Anyway, time will tell!

Have a good weekend and glad all is as stable as it can be given the circumstances.

Silver and Mrs. S* hope both you and your little ladies are doing well :)

X

Silver - HUGE congratulations to you and your girlies!!! What fantastic news!! Sorry to hear it was a bit of a dramatic arrival but great that you felt your c-sec was relaxed and an enjoyable experience - mine was much the same. My Sophia was in an incubator for about a week and needed phototherapy and IV fluids as well, but fortunately neither needed ventilating or oxygen as they were a little older than yours. I guess your girls will be in special care for a little while? I was able to stay with mine as they had parents' rooms at Lincoln county and when the girls were stable enough and off all their monitors, they were able to stay with me in my room overnight. Fingers crossed for you that your babies get super-strong, super-quickly and can come home soon.

twinnies - so sorry to hear that your babies are not growing quite as quickly as they should be. But pleased to hear that you are feeling calm about it all, well done you. I know it is a scary prospect to think that your babies might arrive at 28 weeks but, having just spent 2 weeks living in a neonatal unit with LOTS of poorly premmie babies, i am absolutely astounded by what can be done for teeny tiny babies. i got really upset one day in the first week at the number of the tinest babies you have ever seen that were on the unit and were linked up to all these monitors and machines. But then I realised that actually, those babies are alive and getting well despite their tiny-ness and that is all thanks to some fantastic neonatal care these days... it really is amazing. I will keep everything crossed for you that your babies stay cooking for a long while yet. If you haven't already, I would recommend you go and have a look around your local neonatal / special care unit - it made the world of difference to me that I could visualise where my girls were whilst I was stuck downstairs in recovery after my c-sec.

As for us - we are all home now, got back on Friday. My girls are just perfect and doing so well. It is SO nice to be back in my own bed and to have our girls where they should be so we can start being a proper family. I will keep checking on here whenever time allows as I SO want you all to have a happy-ever after like we seem to be. Keep posting your news!! x x

Hi Mr.s Stevo - am so glad you are all at home together :) and that both yourself and the girls are so doing so well! :) It's really great news! How are you settling into the routine of looking after twins??and how are you feeling after the CS?Still sore/tender or are you feeling much better now? Are you breastfeeding?If so how are you finding that?

thanks so much for the words of reassurance - I have been reading up alot of the past week about premi babies and ICU and yes it is amazing what they can do, so if the worst happens and they arrive very soon I'll be focusing on that and the fact that every tube/monitor is there for a good reason.

I'm back in tomorrow and will know more then - i know they've def grown in the past week as i'm def bigger- whether it's enough i don't know!

Keep us posted with updates whenever you can - enjoy these special few first weeks with your girls!

Silverangel hope your girls are gaining strength every day!

Cakehope alls well!

Twinnies

twininies - thinking of you today, let us know how you get on. Fingers are firmly crossed for you.

We WERE settling into home life quite well - until Madeleine decided last night that she wanted to be awake every hour. The only hour I didn't see was 7am ... perhaps I just slept through her screams?? It is absolutely exhausting but worth every second. I am partially breastfeeding - Madeleine more than Sophia as Soph is still so tiny that her mouth doesn't open quite wide enough to latch on properly so it is sore. But I'm expressing like some kind of dairy parlour so they are getting my milk at least. They are also prescribed a premmie-baby formula to 'top-up' their feeds as I'm not producing enough milk to satisfy these hungry little critters.... they are guzzlers!

As for the C-sec - I think I was super lucky as it didn't hurt much and I was up and about the next day and walking from one ward to the other (much to the amazement of all the staff!). I had dissolvable stitches though and another woman who had twins the same day as me had to have staples (not sure why) and she was still in her wheelchair a week later. It did hurt when I tried to sit up in bed and I nearly collapsed to the floor in agony when I sneezed! But other than that it was all quite manageable and i haven't taken any painkillers for about a week now. Unfortunately for me, since I appeared to be coping well with it all, my husband forgot to give me any kind of sympathy or extra special love and kindness. Humph. I keep reminding him that I had MAJOR surgery less than 3 weeks ago but it doesn't get me anywhere.

One thing that WASN'T manageable was the pain I experienced from trapped wind the night after the surgery!!! I woke up in more pain that I have ever known at about 3am (worse than broken bones and the pain of a miscarriage) - but it was pain in my right shoulder which was weird but it was so bad that I couldn't move and was sobbing my heart out. The doctor said it was referred pain from trapped wind (I couldn't actually feel any trapped wind) and prescribed me some kind of horse tranquiliser and 'mintek' which relieves it. So when you guys all have your CS - make sure you get mintek ASAP, much better to have it before the pain arrives, TRUST me!

DH and I watched 'Emergency in the Womb' last night - we had recorded it ages ago but neither of us wanted to watch it until the babies were safely here. Have any of you seen it? It is about two sets of twins with TTTS and both are under the care of Kypros Nicolaides at Kings. I found it fascinating to watch but sobbed all the way through it - as did DH. I wouldn't recommend watching it until your babies arrive safe and sound too but it is worth watching in my opinion.

Anyway, I will catch up with you all again soon! I have mastered the art of double-expressing and having hands free to type so I will be on here quite often!

Well hello MrsStevo and Twinnies

My mouth dropped as I read that your girls are home now! How well they (and you) have done.

MrStevo is not giving the right amount of sympathy because he is trying to grapple with the enormous life changing shock that is becoming a parent and poor simple men are unable to do more than one thing at a time! Hee hee, believe me, inside he is shivering with awe at how much you have handled and trying to tell himself its because its more natural for women (even though it isn't, we are just superior beings). Anyway enough pop psychology from me.

I remember both my previous (single) babies had a spell of waking every hour, they were such hungry hippos. Do you express using an electrical machine, is it good?

I did watch Emergency in the Womb already, I waited until I was 6 weeks post laser, and sobbed at parts of it too.

Twinnies I am thinking of you today, let us know how it goes

love cake.

Hi ladies!

Great to hear all your news Mr.s Stevo :) - and am delighted you are breast feeding! I intend to too - btw what type/make of pump are you using?Did the hospital supply you with a double one while you were there?I you now renting? I was looking at the medela the other day. I'm going to a hospital lactation talk on Thurs so i guess will find out more info about how my hospital does it all!

Thanks for the heads up about CS - so i guess it varies from person to person eh? Consultant told me i'm also 90% CS. Twins also moved position, one oblique now and one head down. Another question - what type of nightwear did you bring for CS? Long nighties or could you manage PJs with the wound? That trapped wind pain sounds awful - poor you! you are def. a trooper- If i manage as well as you i will be delighted!

I was in again today - got my first steroid injection, back in tomorrow for the next. Consultant decided wanted to do growth next week instead - but he's happy enough with all blood, fluid levels etc :) ... so we just still have the growth concerns. Guess then next week we'll know if growth is going to continue being an issue - fingers crossed, I fell like if i got to 30 it would be like a gold medal!! I'm feeling good anyway,although sleep is still quite disturbed ever since surgery,i seem to carry my angst in my dreams. Anyway I'm happy that 28 is within sight, seems like it's been such a marathon to just get this far!

Cake good luck Friday!

Hope silverangel and twins doing ok!

Know the episode but i don't think i can watch it yet! Will prob wait until after like you Mr.S - i was on the Irish Premi Website that night and that made me cry! - so i don't think i'm ready for that yet!!

Chat soon

xxx

Hello!

Mrs S, great news they're home and you're doing well. Double expressing - I need to get on to that, I feel a bit like a cow in a milking parlour at the moment:). The girls continue to do really well, they're both off all medication and their feeds have been put up to two hourly. They are being fed expressed breast milk as much as possible topped up with a high calorie preemie formula as I'm not producing enough yet. Put them both on the boob today, to get them used to the idea but the nurse said not to expect them to actually have the reflex to suckle for another weeks or so. We're expecting them to be in SCBU for around another 4-5 weeks but now they are back at my local hospital we are managing well.

As for my section, I was able to get up the next morning and shower and walked up to the NICU unit that afternoon, and spent two nights in hospital. I've been walking the dog and feeling pretty normal since (now on day 8), I stopped taking painkillers yesterday and have been fine. I also had the trapped wind pain in my shoulder, very odd! My stitches were internal, the dressing came off on day 5 and you can hardly see the scar already. Would definitely recommend big knickers to go over the scar.

Twinnies, hope you keep them in and that you're doing well too Cake. 50% of us there, 50% to go!

Xx

Hi Silverangel - great news the girls are doing so well! :) so good that they are already off all medication and nice that you can at least have them close to you at the breast even if they can't suckle yet - that skin to skin contact will do them the world of good - like kangaroo cuddles!

Had been wondering about whether your little girls would be staying for the duration of SCBU care in the hospital away from your home - i'm sure you feel much more relaxed now that you are able to be in the comfort of oyur own home and still care for the girls! :)

Sounds like you have also bounced back from the CS fantastically! good on you - out walking the dog already, i'm impressed!

finished the steroids today - they sting abit don't they!

Keep us updated on all of your progress!

Cake good luck for Friday!hope all will continue to go well for you

Xx

cake and twinnies - the pump I bought is a Medela 'Pump in Style'. It is a double electric pump and I would deffo recommend it. I actually got mine on ebay for about £60 (they are over £200 new) and it works fine. I was a bit dubious about using a second hand pump as thought it was a bit gross but you can steralise it to death or just buy new parts for it.

As for post-CS clothing, I took two breastfeeding nighties into hospital and wore them very occasionally. Most nights I slept in a nursing sleep bra (got mine from mothercare) and some of those foxy giant pants that come up to my belly button as the hospital was RIDICULOUSLY hot!!! I moved back into PJs once I got home. During the day I had baggy black trousers or baggy black shorts (dark colours are a must in the early days!) and just a loose top on. If I had my time again, I would put my hospital gown for CS on backwards so it opened at the front - much easier (and slightly more dignified!) to have skin to skin with the babies that way. I would also stay in it for the first 24 hours as you lose a lot of blood and it is easier to deal with in the gown - and doesn't ruin your stuff.

twinnies how many weeks are you now? Great that the consultant is pleased with everything and happy to wait another week for growth scan. Fingers crossed for you. Well done for braving the steroid injections ... they do sting very much indeed, but are well worth it

Silver - fantastic that your girls are doing so well!!! I did the same as you - expressed what I could and they were tube fed it and then topped up with formula. We are doing the same at home (although bottle feeding rather than tube) and the girls are piling on the weight. The hosp encouraged me to keep putting them on the boob and it was worth it as they are both now very capable of breastfeeding ... it is just the time factor that prevents me bf all the time really - so hard when there are two!

Hi MrsS

You're up early as well! I'm have a very sore breast :( so i came on to post about it - has had me up for ages.

So glad the girls are pilling on the weight :) sounds like they are really thriving now!

That Medela pump is the one i have been looking at online - yes they are expensive! - good to know a secondhand one has worked well for you. something i will now consider too! I am also going to check out rental prices, there is a company not far from me that rents equipment.

Thanks for the CS clothing tips! Really was not sure what is good to bring or not! My mum showed up the other day with a cream dressing gown (as it's much lighter than my one)but i really didn't think cream would be the right colour!!was seeing a big mess with that dressing gown.....

I'm 27weeks this weekend, so we're getting close to 28 slowly but surely. Cake - you are 28weeks now?! Wwuuhhoho :) Will keep you all posted re next growth scan. I think they've def. grown although whether enough can't tell - my belly has certainly expanded in last two weeks - i now look like i have a basketball sticking out my front!

Havent checked this thread in a while, so thought id check in - wow by the looks of it you ladies have had lots of goings on! Congrats MrsStevoand silverangel on your girls arrival!! How odd you both had girls, wow a girl celebration:))) So happy for you both, hope i havent missed anyone out, but for those who are still waiting im still sending out positive vibes. Would love to know how the girls are doing - incase youve forgotten my girls are 3 and half now - living proof that these tiny little miracles can grow. My goodness can they grow!! Well done ladies, enjoy them, they will grow so quickly:)

Hi all,

Silver so good to hear from you. Its great to hear the girls are off medication. Are you in and out of the hospital a lot - is it very hectic??

MrsStevo How cool yours are piling on the weight, good girls! How are you finding breastfeeding? Do you do them one at a time or are you now a skilled baby juggler??

Twinnies I will be 28 weeks on Monday, todays scan was fine. Just a well-being one no growth till next week. Still unequal fluids but again all other variables are of happy babies so its a bit of a mystery really. Does the steroid shot really sting, just going in or for a while after? I'm glad to hear you feel you have grown, I will certainly be thinking of you on Tuesday.

Hellsweishy Thanks for coming back. You know, I do believe, all of us on this thread are having (or have had) girls. A twin girl boom!

Hi Cake glad all ok despite the 'mystery' - hope you get good growth next week :) The steroid shots weren't that bad really, just a little uncomfortable. Only hurt me after the needle came out and the steroids started moving through my bum/hip. First day was ok as i was still lying down waiting for consultant for about ten mins after, second time got quick shot from his midwife/sonographer and left v.quickly so i ended up hobbling to the train station!

Hellsweishy thanks for touching base again! All of us are having/or have just had girls!

Chat soon xx

It is indeed then a baby girl boom! How wonderful!!! I was the only twin mum in my twin club for a long time with two girls, so i do like to hear of more coming along. Re steroid shots, i had mine about a week before i had my girls, and first one was in the leg (painful) but second in my stomach - wasnt sure about it - but i hardly felt a thing!! Well done on the breastfeeding, i managed to express for the first 3 weeks when they were in special care, but it dried up after that, which was really upsetting at the time but now i can see that i did my best. All that matters is that they feed well, and put on weight, however you manage to do that. Hugs to all you fabulous twin mums, and to your amazing girls xxx

hi ladies,

Thought i'd give my latest update - the girls did really well today! :) Twin 1 has bounced back and has caught up in weight with Twin 2,only an ounce between them. So am really pleased considering it was looking like the difference between them was just getting bigger and bigger :) They're still on the 'low' side of normal for weight, but consultant is happy enough with them for now and now we are aiming for 32weeks. It's great to feel we've moved on from the 27/28 week target at last!

HOpe everyone is well. Hope all the little girls are continuing to thrive :)

Cake hope all goes well on Friday!

xx

Wooohoooooooo! great news twinnies so pleased for you! My babies were always on the low side too - neither ever made it over the 50th centile and they were diddy when they were born but are packing on the pounds now! Great to hear good news from you, clever baby twinnies!

twinnies I am so pleased for you thats great! It seems she was just having a little rest then!

Its good to have a little reprieve of worry to enjoy having such a special pregnancy - that is before we get really really massive and lolloping - actually I feel a bit that way already, SPD and varicose veins are NOT my friends.

I hope I can also have good progress on Friday!

Well done to the little-twinnies!

Sorry cake I realise I didn't answer your Q. I don't breastfeed them all that much to be honest - Madeleine goes on a couple of times a day and will feed reasonably well but Sophia just hasn't got the hang of latching on and she just gets very frustrated and tired and then starts crying. It is also very hard to breastfeed one whilst the other is crying out in hunger - and managing two at once is only possible when I'm in bed but even then Sophia won't feed so it becomes a performance. I reluctantly made the decision to bottle feed a couple of weeks ago just so we could get out of hospital. I had been determined that it would be temporary and that we'd get back to breastfeeding exclusively but tbh the bottle works really well for us. I am expressing after every feed so they are getting about 50% of my milk and then 50% formula top up so I don't feel tooooo guilty about it all. Fortunately my health visitor is super-supportive of any decision I make and isn't ramming the 'breast is best' slogan down my neck.

MrsStevo Thanks for the detail, I am trying to figure out logistics of b/feeding two with the needs of two others. I breastfed both my previous babies until weaning and while I'm glad of it, it is a serious time investment, I am pretty happy to introduce a bottle or top up as soon as is possible, any breastfeeding nazis will meet my shirty side if they get snooty!!!

Scan today went fine. Consultant is now no longer 100% certain that the fluid inequalities are TTTS due to the babies doing so well. There is some head scratching and wondering if some odd fluid dynamics due to holes in membranes is at play instead. But it means that if all stays well I can aim for 34 weeks for cesarean - assuming I can keep them in that long of course!

I hope you are all doing well, I love updates!
love Cake

Cake great news you are aiming for 34 weeks! I'm sure they will stay nice and snug in there for you, they seem to be happy at the moment! How is your bump these days? I've had a big burst and seem to be getting bigger really fast now - my bump is starting to resemble a massive basket ball i'm all out front!

I've been doing lots of reading on breastfeeding and research on pumps etc.. - i have no idea how hard it will be with two but i will try my best anyway! You will have your hands full with your other two!-what ages are they?

X

Hi Twinnies

How was the scan yesterday?

Hi Cake

The laptop was temporarily away yesterday! All is well with us :) The twins seem happy enough inside at the moment so i'm really hoping we'll get to 32 at least. Growth is next week so here's hoping they will have grown enough to keep my consultant happy!

How are you feeling now? How is your energy holding up? I've suddenly got really tired in the last week (it's driving me crazy as i hate not being able to run around like i usually do!) My bump is suddenly heavy for me, so i imagine that is part of the problem! Anyway - can't complain as otherwise I'm feeling pretty good!

I also now feel like i've an octopus living inside me! These ladies are kicking like mad all the time! :)

Silverangel how are your little ones doing? Are they still in hospital? I hope they're getting bigger and stronger by the day!

Also- a question to the ladies with twins already here- when did you start preparing for their arrival?Buying things? I've been holding off out of fear of the worst happening but now am wondering if maybe i should start thinking about it - we have nothing for them!!

Mr.Shope you are settling into life at home with twins well - sounds like you are very much on top of it all!

xx

Hi everyone,

Glad to hear your still both hanging in there Cake and Twinnies!

Sophie and Alice are doing really well, out of their incubators and into cots, feeding three hourly. Still a combination of tube and bottle and a bit of breast but it really tires them out to do it themselves so they have to alternate. I am expressing but my milk seems to have gone down, I've been prescribed Domperidone to try and get it back up. Cake. The pump I've been using is the Medela swing, its a single - if I was to buy one I would get the Medela but the ae expensive.

Twinnies - I didn't really let myself buy much at all until about 28 weeks, we still hadn't bought everything by 31 weeks when they arrived!

The girls are likely to be in SCBU for another couples of weeks - we can't wait to get them home now:). I'll try and figure out how to get some pics on here when I'm at home on the computer.

Mrs S, hope all is still well with you.

Xx