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 all,

Cake hope you got on ok today and avoided delivery- been thinking of you!

My c. section has been booked for Oct 4th! great to have a date to focus on, i can't actually imagine them in my arms yet!It's been such a journey,can't believe the end is near - so three weeks from today. They seem happy enough, although my consultant still grumbles about growth - they grew less in last two weeks than other weeks (now 2lbs 12 and 2lbs 14 at 31weeks +2), but they assure me it doesn't really matter - my babies will just be tiny. I'd love them to beef up abit though before delivery.

Silverangel - how are you getting on at home with your girls? Hope you're feeling settled with the little ones.

Mrs.Stevo sounds like you've got a good night feeding plan that works for you! I haven't even thought about such things yet! Btw i seem to remember your c section went fairly smoothly for you. How long did it take you to feel like you'd recovered fully? HOw did you find travelling to the hospital in the days after you were discharged? You weren't bed bound when you came home were you?And how is your scar healing now?! Oh and also - were you able to hold your babies after delivery?or were they swept away by the peads? Lots of questions!!

xx

Hi all,

I managed to avoid delivery again today, yay!

Can you believe I still don't have a cesarean date! Todays scan had the verdict of still stable, but also a bit delicate enough to warrant continuing with the frequent monitoring under threat of delivery within 24 hours if anything further 'dodgy' happens. I go back on Friday and if by next Tuesday everything is still holding he will book me a date - I will be 33 weeks then!

Twinnies glad to see your girls are happy inside, they may well start to growth spurt, its so exciting you have a date to work towards, so you will be just over 34 weeks then?

I am hungry hungry hungry. I ate with the little ones earlier, but I fancy some supper...

xx

Twinnies - eeeeeek! SO exciting to have a date. That is so close as well. Very excited for you!!

My C-Section went really smoothly as you say - much better than anticipated. It was about 12 hours before I felt able to stand up and walk a short distance, 24 before I could walk to the bathroom and was allowed to have a shower. By 2 days I was happy to walk to SCBU to see the girls rather than go in a wheelchair. To be honest, there wasn't a lot I couldn't do within about 24 hours except sit up in bed without pushing myself up. Prepare to have no stomach muscles whatsoever. I couldn't blow my nose because I had nothing to push against if you see what I mean - that lasted about a week. I didn't have to travel at all because as soon as I was discharged, I moved upstairs to SCBU where they had parents' rooms. I did go in the car on about day 5 which was fine - just needed to lower myself into the seat gently. I know people recommend having a cushion over the CS scar in case of heavy braking etc. Anyway, I certainly wasn't bed bound at all - that was my worst fear. My scar has totally healed - has been healed for a good 3 weeks at least. I recommend getting stitches rather than staples if you get the choice - they dissolve whereas staples need removing and leave more of a scar. After the girls were born I was allowed to hold both of them for about 5 mins. Long enough for photos with them and to give them their first kisses - and to sob uncontrollably of course!!! My DH also got to 'trim' their cords - the surgeon obviously cut them to get them out of me but once on the trolley thing, my DH cut the cords properly. They were weighed in theatre and were hanging around for various initial assessments for about 15 minutes altogether.

I wasn't able to have skin to skin with them in theatre as they did have to be whisked off to SCBU for assessment first. I was in recovery for 5 hours before I could go and see them which almost killed me. BUT my DH was able to go with them and he took the video camera and filmed them for a while so I could see what had happened. As soon as I was allowed up to SCBU (you have to be able to weight-bear so you can transfer into a wheelchair) I was able to hold them and had skin to skin. I'd recommend having your theatre gown on back to front so you can tuck them into it rather than get fully naked.

Couple of things to be aware of: the trapped wind after a CS is unbearable!! I woke up on the first night in total agony - altho the pain was bizarrely in my shoulder. I needed some kind of hard-core painkiller as well as something called 'mintek' which helps relieve the wind. It was like that for a couple of days altho the pain was never as bad again. The other thing that I wasn't entirely prepared for is how much you bleed after a CS. I practically gushed blood (sorry if TMI) for the first 6 hours - although I couldn't feel it - and had to be mopped up several times. The first night in hosp a midwife had to change my underwear and pads for me as I couldn't bend to do it. Make sure you have plenty of large maternity pads and lots of big knickers that you're happy to throw out afterwards!!

Think that answers all your Qs - feel free to ask away, it helps to be prepared and I'm happy to answer anything... even the potential TMI stuff!

Cake - great to hear yours are continuing to stay put for the time being! It sounds like you are on constant standby like we were. I had 3 days at a time when mine were staying put before another scan and it was frustrating as I couldn't really plan to do anything... but more just anxiety provoking than anything. Hope you're coping ok with it all. Have you got everything ready for their arrival? I had bags packed and a list of 'last minute things to pack' (like contact lenses, mobile phone etc) next to the bags - it was invaluable in the end as I went in in fairly urgent circumstances.

Take care x x

Hi all

Cake yay!! :) delivery avoided yet again - go twins!! you will get to 34 i know it - you are so close! I'm sure you'll get your date soon, maybe it's not booked yet as you're on a more day to day basis with them at the moment. Anyway, remember each extra day a blessing!

It's nice to have a date, kind of making their arrival much more real now! I've spent the last two days cooking massive portions of food for the freezer - still have no baby stuff bar few bits for the hospital - maybe i'm mad! but i reckon it will come together quickly enough - lots of friends have bits and bobs on standby for us!

Mr.sS thanks SO much for that info about C section - really helpful as i actually get quite nervous over operations and the like. Have to really baby step my way through things like this as i was sick as a child for a while and i just seem to be more nervous about procedures as a result.

I remembered you mentioned the shoulder pain. I went for my last physio this morning and she gave me great tips about that. She explained the medical reason for it but i admit can't remember all the details. Apparently peppermint tea and prunes really help! She eve said to drink the peppermint tea with cold water if necessary as soon as possible! Cake you might want to try this too!

I've yet to find out if there is a parent room we can stay in, our house is about 1 hr 15 from hospital, even longer if you're taking the bus - hoping to stay on and off with a family friend who is close by.

Thanks for the headsup anyway- appreciate it! Think i might stock up on some more granny knickers now ;)

Mr.s S hope the girls are doing well!

Chat soon everyone!

xx

Hi all,

I agree that is really useful stuff to know about c-sections MrsStevo thanks for all that. (And I will stock up on peppermint tea and prunes, good advice Twinnies !)

Todays scan was just fine, both babies looking stable and happy. So I am good to carry on until Tuesday, hopefully I will get a c-section date for the following week.

That's brilliant Cake! You will make it to 34 - i know it!! :) xxx

Hello everyone,

Cake and Twinnies, glad you're still hanging on in there. Twinnies, hope they do have a parent room for you - an hour and fifteen minutes is a long journey to be doing every day. Any way you can find out and almost book one in advance?

We're all doing really well. Finally got a visit from the health visitor, 12 days after discharge (!) and she weighed the girls who are now 4lb14 and 4lb11 and doing well. We are all sleeping pretty well so far, they are on a four hourly routine with a feed at 2am, but they are settled back to sleep by about 3am. Hubby goes back to work on Thursday though so I am going to try and do the 2am feed by myself if I can!

We've been out and about for walks in the buggy, which always take longer than planned due to people stopping us, but everyone is so lovely and its just so nice to have them with us and be able to take them out.

Went to to the doc the day to get repeat meds for their reflux issues and for the nutriprem - luckily for me his sister had triplets a little while ago so when I asked for the ready made formula he quite happily prescribed me 120 cartons, apparently they dont generally like to prescribe it as its expensive compared to the powder but its so handy to have.

Mrs S how are your girls getting on?

xx

Twinnies, meant to say re section, pretty much ditto what Mrs S said. I had the op at 10pm, by 9am the following day I was able to shower and then walk slowly to SCBU. My biggest advice would be to take the pain meds as prescribed even if you dont think you need them, staying on top of it is better. Also, if you want to try to bf and they are in SCBU insist on help with getting a pump and expressing ASAP. I didn't get a pump for five days and am sure that was instrumental in me not being able to get a decent supply. Finally, BIG knickers!!

As Sophie & Alice arrived at only 31 weeks they needed quite a bit of 'work' when they were delivered so I didn't get to see them. Hubby was allowed up to NICU about half an hour after they were delivered and was able to tell me that they were ok. The nurses also took photos and brought them down to me so I could see them before I was able to go up there.

I'm fully recovered from the op now. I was in such a bad way with my back before they were born that even the day after the section I was in less pain then I was before!

Hi there!

Great to hear from you Silverangel sounds like the girls are doing so well :) :) You must be delighted to finally have them at home with you! I hope i can have a good routine like you so quickly after bringing them home, sounds like you are doing well on the sleep front!

Can i ask what buggy did you buy? I still haven't got one!

I asked about a parents room and they only have one. It's only for parents of critically ill babies. I'm quite surprised as this hospital is the national maternity hospital and has the biggest ICU unit in the country! Shows you how fantastic the Irish health system is eh?

Can i ask Mr.S or silverangel how much time you spent daily with the girls once you were home and they were still in care? I'm a little stressed about the distance issue at the moment - i want to spent as much time with them as possible. I hope to stay with some friends so i can be closer to the girls.... only thing is then i'm not with my DH or at home for most of the week. We'll work it out i guess. He works quite far from the hospital........

Cake how did you get on today? Babies still behaving for you?

All fine with us today at scan so hopefully we'll get to 34 - on the countdown now - 14 days to CS! :) Can't wait to meet them:) (but still abit nervous at the same time!)

xx

Hi all,

MrsStevo and Silver I have been reading your descriptions of the cesareans avidly and repeatedly. Thank you for that. It sounds like both of you had really good sections, I hope it goes well for me too. I've been reading the c-section advice notes from the hospital, it was a bit scary, I've never had surgery before!

Yesterdays scan was fine, still holding and I have a date - 27th October, so I will be 34+1!! Its quite exciting. I still have to have a scan on Friday and Consultants threats of early delivery still apply if dopplers change, but if all is well, next Tuesday will be their birthday!

Silver your GP sounds ace, I'm really glad he gave you all those cartons. Its not exactly easy looking after TWO newborns with reflux. How do they look now they are those nice weights, are they looking quite chunky? I am sure you will be fine once MrSilver goes back to work, it always takes a leap of faith to realise you can do it and are actually a supermum!

Twinnies I know exactly what you mean about how much time is required with the babies in hospital, although I don't live far from the hospital, I will have 2 in SCBU and 2 older ones at home, one requiring school runs, one at home and for some reason even though I live in the city, both school and hospital are up some awful hills! But from what I've read on other threads here on mnet, it is acceptable to 'allow' the scbu nurses to handle things to allow us to recover or whatever. I hope that turns out to be true in our cases!

About buggies, we had a revelation in Mothercare recently, it turns out the Phil and Teds Vibe or Explorer can take 2 newborns, one in a car seat and the other in a travel carrycot. You need an adaptor bar for the car seat is all). This is good news for me because there are tons of phil and teds for sale secondhand compared to other twin tandems and I definitely want a tandem to get through doorways and things and multiseat configuration so my 22 month old can also have a sit down if he needs to (while one baby goes into the sling). I think thats the one we are going to get, although dh wants to buy it shiny and new which will cost about £600 in total with all the bits and carseat!

Phew, written an essay, better go play with ds, he's gotten into his big sisters Lego stash and is slinging it everywhere!

xx

just a quick log in!

Cake - great you have a date! I will be a week after you (i presume you mean September!) Oh so close now for us both!! :)

There's me thinking how will i work out ICU - but you really will/do have your hands full! Are there family members near by/friends who can give a dig out and relieve some of the load for you??

Hope Friday goes well for you!

xx

Hi, just a quick update...

Todays scan was fine, it was just a quick one to check dopplers, and I am all go for c-section on the 27th! All my admin pre-op stuff is done, I just wait for the day!

So Twinnies You will be last lady standing!

Can't believe we are both so close to delivery!!! - the time has flown by over the last few weeks!

Cake wishing you the VERY best of luck on Tuesday! I hope it all runs as smoothly as posssible. Will be thinking of you so much. I'm sure you're really excited to meet your little girls after all our dramas! :)

Let me know your news whenever you can! Will be dying to hear their names and your news!

I'm exactly a week after you for C-section at 34 +2 (pretty much same as you) - counting down the days! Trying to clean the house (again) frantically now!

You're right about last one standing.... and then there was one!!

Chat soon xxxx

cake - 27th of THIS month????? OMG! Eeeeeeeeeeeek!! SO excited for you. Can't wait to hear that they have arrived safely - like Twinnies says, I hope it all goes smoothly and you get to cuddle them straight away before they whisk them to SCBU.

And Twinnies - NEXT WEEK??????????????????? EEEEEEEEEEEEEEEKKK!!!!!!!!!

Keep me posted on how you're getting on. I'll be waiting with baited breath!

Good luck Cake!! :) xx

cake - YOU MUST HAVE HAD YOUR BABIES!!!!!!!!!!!! EEEEEEEEEEEEEEEEKKKKKKK!!!!! I'm so excited for you. I really, REALLY hope everything's ok and you are now squeezing two tiny little bundles of scrumminess. Thinking of you x x

Hello!

Babies are here! Excuse any spelling, I am on iPad in the hospital.

It all went great, dt1 is 4lb 4oz, dt2 is 3lb 14 oz. They were both born loud and hungry, started rooting straight away, once I was back in recovery, I had them both for lovely skin to skin cuddles and they both also latched on and had a good feed!

We had thought we might not need scbu at all but then they started to sound mucousy so they were taken to incubators and given air via cpap. BUT then we were told they had an urgent case coming in from Wales and my babies had to be transferred to another hospital as there was no more scbu space here as they had to accept the emergency! So we are separated for now, but it's not so bad, I will either join them there or they will come back if room becomes available and I am expressing loads for them, so I do miss them, but it's understandable.

The procedure itself was fine, I was really nervous but everyone was relaxed and happy and really took good care of us all, 24 hours later I am ok mincing about and even got myself dressed this morning!

Oh my, the girls are gorgeous, very feisty and strong and so so sweet. Twines you will be fine next week.

More later, love to you all. Xx

oh wow, congratulations!!! I havent logged on for a while, dog ate my blackberry but that's another story!), and there's a shiny new set of twins:) Massive congratulations to you, so sorry that you are seperated for now and hopefully they will wither transfer you out or them back in asap. What great weights they are too - hopefully won't need too long in SCBU at all. My theory that it seems to be girls who make it through TTTS seems to be coming true - up to you to prove me wrong now Twinnies!

Sophie and Alice continue to do well, had a consultant review today and they dont want to see them again until January. They are still struggling with the reflux, they dont get sick with it but do seem very uncomfortable. The consultant upped their meds today as they have put on weight since last prescribed so hopefully that will make them more comfortable. Sophie is now 5lb6 and Alice 5lb1, they look like 'proper' babies now, not preemies and they can certainly scream like them!

We are collecting our new car this afternoon - had to give in and have bought a Vauxhall Zafira - so not the car I planned to be driving at 31 but with the girls, buggy, car seats, carry cots and the dog, the old car just wasn't working.

Must go as have two screaming children to feed. Countdown to you know Cake!

Mrs S, hope all good with you.

xxx

Ah!! ladies i just wrote a message - but it disappeared on me :(

This one will be shorter i'm afraid!

Cake - fantastic news the girls arrived safely! Really so delighted for you :) Congratulations to both yourself and your dh!! It's such super news!!! :)

Sorry to hear they've been transferred but hopefully very soon you'll be reunited! So great they are feeding from you already :)

silverangel so glad all is well with you and the girls! :) funny you mentioned your car, just before logging on myself and DH just realised that it's going to be a squash with my car too - i hope we can at least manage for a few weeks before changing - he was just out measuring the boot to fit the buggy and carry cots!

We're doing fine, consultant is happy and delivery is Tuesday not sure what time. The girls also have grown loads in the past two weeks which is great!
So just counting down the days in the meantime!

Chat soon :) xxx

cake - WOOOOOOOOHOOOOOOOOOOOOOO!!!!!!!!!!!!!!! That is just fantastic news. I am SO, SO happy for you. Congratulations!! More twinny-girlies! Sorry to hear that you have been temporarily separated. Hope you are able to use the time to rest and recuperate so you are super-strong for when you're back together. Do you have names for them yet? Can't wait to see some pics of them. Congratulations again.

Silver - wonderful that your girlies are doing so well. Sorry to hear that they're suffering with reflux. My Sophia is the same, but her main problem is serious vomiting. It is projectile and is fairly embarressing and inconvenient when we're out and about. It is mostly just horrible to watch as she gets SO upset when she's sick. Poor little lamb. We're using Dr. Brown's bottles though which seem to be helping a bit.

Twinnies - YOU'RE NEXT!!! You must be SO excited! So pleased to hear that the babies are doing well and are growing. How wonderful! Can't wait to hear your news next week.

We are all really well, although the girls are all out of sorts in this heat!!! Madeleine slept from 11pm to 6:30am this morning - hurrrrrrrray! Unfortunately, Sophia didn't so I was up half the night anyway. Think it was a fluke though - Madeleine stuffed her face all evening and we didn't get any peace so she didn't need any more food over night. They are ten weeks old today - can't believe how quickly that time has gone and are 9lb and 7lb 8oz now - biffa babies.

I'm still living on cloud 9, I love these little girls SO much and feel SO lucky.

Twinnies - I bet the time will fly by and it will be next Tuesday before you know it. Sending you lots of luck.

Mrs S - are yours on nutriprem? Mine are and I think that the powdered stuff makes them constipated and the tetrapaks make the reflux worse so am alternating the feeds at the moment. Wow, they are biffa babies:) HV told us we had to wait until they are around the 8lb mark before we let them sleep through, Alice I think would at the moment but Sophie wakes up screaming bang on five to two every night so we are waking Alice and feeding her too. Out of interest what volume are you giving on each feed S & A are on 100ml and finishing it with gusto - the consultant yesterday seemed to think that was quite a lot for two who are still pretty tiny.

Cake - hope you have been reunited or at least know when you will be.

xx

Silver - My girlies are on nutriprem 2 which they seem to be fine with generally. We're using Dr. Brown's bottles now with a level 1 teat which seem to be working better for Sophia. That said, she was pretty sick again after her morning feed. I haven't found them to be constipated, they go pretty predictably every 2 days which seems to be ok with them. I have spoken to my GP about prescribing them the ready-to-feed cartons today and he is going to give me 10 of them to see how we get on. Thought that might be a bit easier when we're out and about and one less hassle to deal with. When you said tetrapaks, is that the stuff you meant?? The LAST thing I need it to make it worse! Ugh. Volume-wise, it varies, but Madeleine will generally take 130mls - 160mls within about 25 mins and Sophia between 100mls-130mls dependent on how hungry she is. In a day, Madeleine takes about 700mls on average and Sophia around 650mls, but Sophia's can be more like 500 some days.

I am having a bad day after a lousy night with the girls. Had to have a sob this morning as Sophia just looked so sad after she was sick. I've had her with me all day now as I feel awful. Poor little lovey.

Twinnies.... this time tomorrow!!!!! VERY excited for you. Big fat fingers crossed for a smooth delivery and everything being perfect with your babies. Looking forward to hearing your news.

Cake - HOW ARE YOU??? Hope you're recovering well and you have been reunited with your girls. Looking forward to an update on your as well.

Hello,

I am indeed with the girls again, one is out of her hot cot, the other will be soon. They are still mostly tube fed though, we are on a regime to try and get them to feed independently, we are having a go at the breastfeeding, it's so tough. I don't have a supply problem far from it, but just cannot get them to take enough in the short time they are 'allowed' to be on. Sigh. I'm not sure we will ever get out of here.

silver and mrsstevo you sound so organised and sorted, I'm sorry you had a rough night though, I'm thinking ahead to being at home and so far just can't imagine it!

Awaiting with baited breath to hear from twinnies...

Love to al

hi all!

Very short message - will write more later - the Clara Lily and Esme Carol arrived safely at 2.19 yesterday afternoon!!! Weighing 3lbs 6 and 3lbs 7 :)
they're the tiniest babies i've ever seen but are soooooo gorgoues. They both arrived with a fine set of lungs! and we were able to go up to them last night and cuddle them for over an hour. They're doing wel so far - although Esme is on oxygen for the moment. Am running off to try to feed Clara from my breast and see how her sucking/latching is! Hasn't been a spare minute yet today between one thing or the other!

Can't believe they're finally here!!!!!

Didn't we all do so well!!! :) :)

Will write again later xxxxx

I've been reading your thread for months and would like to say congratulations to you all! I sound a bit like a weirdo stalker, but I thought I had twins when I was first pregnant (I don't, it's just one), which drew me to your thread - and then I was hooked! I've been really touched by what you've all been through - and isn't medical science amazing? Anyway, I'll leave you to enjoy your babies. Very many congratulations once again and best wishes for the future.