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, yep, I offered an extra oz at each feed, sometimes they finished it and sometimes they didn't and if they didn't settle between feeds I offered them more, they sometimes took up to 3oz more! I was worried about over feeding them but they were definitley hungry and they seem to self regulate quite well, they are now back down to their normal feed of 5oz. It didnt affect their sleeping once they were asleep but it took an age to settle them to sleep which isn't normally the case. Lasted for five days so it does end!

x

Hi everybody!

Been meaning to write for days - everytime i logged on something came up and i had to leave it!

Silver sounds like you are all in great form! Delighted the girls are thriving :) and so grown up in their own cots and room!! Our two are still sharing a cot, it's a really big one so i hope to get another while out of it yet - our double carrycot however, is getting a little tight for them.They nap in that downstairs during the day!

Cake thanks for the directions for double bottle feeding - i decided to try and it worked quite well. Esme didn't choke or have bad reflux and it cut time down alot for me! Feeds are still taking a really long time coz of bf and top ups - some days i'm now thinking i should just give bottles now but i also feel i can't stop the bf now for some reason (sometimes i'm exhausted as end up expressing at about 4am every night!)

How were your injections? My girls were in awful form for three days - i had to get my mum to come up and help for two of them. One day they didn't sleep from 6am until 8pm and were so overtired. Thankfully we're back on track now :)

I finally got a car that can fit all the twin bits!! :) A passat estate - it's great to be able to leave the house! I've felt quite stranded the past few weeks as we're in the country and although i can walk to the village for shops most of my friends/family live a car drive away so always waiting for DH to be home to come out and even then we couldn't fit the buggy!!

Re keeping them awake - Cake glad i'm on the right track i do the baby grows too! Poor pets! anyway i've decided to just let them sleep when they want now - i must admit that Gina Ford book had me slightly stressed thinking i had to try make my babies stay awake (how stupid of me i know!!) Even with all their sleeping during the day they sleep at night for us and only wake for night feed!

Ladies can i ask - how and when did you get rid of the night feed???

Glad everyone is well!
Mr.s S hope you and your gang are in good form!

xx

Hi all,

Twinnies My two were surprisingly fine after their first vaccination, they cried and looked really annoyed when it was done of course, but then no effects whatsoever, not even grumpy, I had the calpol ready and waiting but it was unnecessary! Hey, are yours only waking for one night feed?? Mine have 2 between 7pm and 7am - one at 10 or 11pm and one sometime in the wee hours.

I know what you mean about the Gina Ford routines, I started reading them convinced I must keep to them to keep the babies happy, but then adjusted and adjusted, particularly on sleep, and now, they are just a general guide!

You are doing an awesome job still with the feeding, I really understand about being reluctant to give up the breast/expressing, I think it must be in a mums nature to keep doing what we feel is good for the babies even if its hard for us, even though I was desperate to stop expressing, I kindof didn't want to let my supply dwindle. Anyway, going to all bottles and formula is still one of the best decisions I made just to share the load! I don't miss the breast pump whatsoever.

Right, must dash, and get the kids dinner fixed.

xx

oh we're the same with feeds - we feed 7pm, 11pm and one in the wee hours too, anytime from 3-4am. They won't stretch any longer yet. I've decided not to push them yet either they're obviously not physically ready as won't feed more in evening feeds and possibly not awake enough in day either.

Can i ask what formula you use? I'm topping up at night after breast with nutri prem 2, considering moving them to a hungry baby one- they are just constantly starving. During the day t's only breast and expressed milk, sometimes when they have EBM in bottle they can drink up to 130mls and thats after about 15on the breast - crazy kids!

We're meeting with their twin friends from NICU on Friday for first time! Two sets of twins will be in our house :)

xx

My babies are on SMA Gold. When they were first born, they were on Cow and Gate, I asked for Nutriprem but was refused, not sure why, I think because the breastmilk supply was good, I didn't push because I'd decided to try for all breastmilk, for topups too. It was when we got home that I began to introduce SMA Gold which they took to very well, not sickie at all like they were on C&G.

I found my babies would drink more breast milk than formula, but still be hungrier sooner, isn't that interesting!

Last night one of twins was very wakeful! I am tired this morning! Zzzzzzzz

yes mine are the same! it's seems the formula keeps them full and not the breast milk :( imagine they nurse for 20mins sometimes and then drink at times 130mls of EBM afterwards - crazy babies!!

Think i'm going to start them on abit of Actimel Hungry Baby tomorrow night and see how they are on that!

Hope you get some sleep tonight - i'm longing for the day when the night feed is no more!! They're 10weeks. . . .surely it must be on the horizon sometime soon!
xx

Hi all,

I had an early Christmas present last night, a night nanny!

She turned up and basically took care of everything, I didn't even hear a thing, and did not have to get up once, it was great. I did of course wake up anyway, especially at their usual feed times. But the babies were in great hands. I'm hoping to have a night nanny again sometime!

Twinnies your babies are packing the milk away aren't they!? What do they weigh now? Mine are 8lbs 9oz and 8lbs 3 oz, tracking the 25th and 9th centiles, I have a feeling they wont be giving up their night feeds anytime soon!

Lately they have been really fractious at bed time, it seems they get over tired and one or the other is then unsettled, sometimes for 2 hours or more! What has happened to my lovely calm babies?!?!?

Silver and MrsStevo how are your girls doing?
Are you all looking forward to their first Christmas?

Oh my goodness - a night nanny!! amazing!! :) I have thought of that a few times - my sisters asked me what i would like for christmas and i said for them to do the 11 and 3am feed! - we'll see if that happens! ;)

I had a really tough day with them yesterday - they are growth spurting and DH was gone from 7am - 11pm, i had to ask a neighbour to come in for a few mins about 6.30pm - i couldn't seem to manage to make the bottles for the night as they were screaming for food so much! The leftover lunch was still on the table, the fire was out and the whole place a mess - i hate when things get like that!

Despite the crazy day - myself and the girls slept through the 11 feed (they refused to nap all day) and slept from 9pm-4am - so a better stretch of sleep!

At last weigh in my girls were 8lbs 3 and 7lbs 10 but that was about 10days ago so add on abit to that!

Re bed time - they're just all becoming more alert aren't they?! Mine tend to refuse a late avo nap now - and even though they're awake more won't stretch at night. I spoke to dietician about them and the 'constant' feeding that goes on in my house - she siad they're just playing catch up and not to push to drop night feed just yet as they obviously need it.... i just hope soon we can get more sleep!

..... a night nanny ...... that will be my Christmas present - I've decided!

Must run - we're having 12friends over tomorrow evening for pre Christmas nibbles ( i might be mad) so want to catch the supermarkets before they are packed out with Christmas shoppers! Btw i went to tesco with the girls for first time the other day - we were mobbed!!!

xxx

Hi all,

I absolutely recommend a night nanny, she was excellent and the only downside is that I could get too used to it.

One of the babies has her first proper bout of the lurgies. Poor little thing is all out of sorts with a vomiting virus, she even refused a feed last night for the first time ever. I think I got about 2 hours sleep. Tonight the night nanny is coming again, hopefully that should take some (or all) of the pressure off, I hauled dh out of bed last night to help out so he went to work this morning like a zombie.

I'm very tired, I am not looking forward to the other twin inevitably getting this bug just in time for Christmas

Hope you are all well. x

Oh no Cake - hope you get a better night tonight!

Quick update from me - all still going very well, the girls really are a delight at the moment and we are thoroughly caught up in the christmas madness. FiL flies in this morning so off to Heathrow in a mo but wanted to wish you and your families a very happy christmas and a happy and healthy new year!!

Xxxxx

OMG I'm so sorry ladies - I fell off this thread yonks ago and haven't had time to come back!! I think about you all the time though and wonder how you're all getting on with your little miracles.

Just a quick hello from me now in fact as I am exhausted after Christmas. We are all really well - the girls are now 24 weeks / 5 months and are absolute treasures. Last weighed about 3 weeks ago and Madeleine was 14lb 4oz and Sophia 12lb 6oz. They are HUGE now but I am still in total denial that they are growing up - they are still my precious newborns to me! They sleep 7pm-7am, are in a proper routine during the day so I know what I'm doing and when, and we have finally, FINALLY beaten the reflux!!! Sophia hasn't been sick for about 2 weeks and Madeleine for a couple of weeks more than that. It is like we have entered a new world!!! Everything is so much easier when you can be confident that you can go out for the day and not have to seek out places where Sophia can safely projectile vomit!

We had an ok-ish christmas. STUPIDLY had my parents and my MIL to stay (our tiny house was bursting at the seams!!). It wasn't in the least bit relaxing and I didn't really feel that it was as special as it should have been for the girls' first christmas, but they did at least spend it with their grandparents which is a nice memory. Everyone left today - I am SHATTERED!!! DH played with the girls a lot today as I had THREE naps! Still planning on being in bed by 10pm as well!

cake - sorry to hear you have an attack of the lurgy in your house. Hope all is better now and you're managing to get a bit more sleep. A night nurse sounds GENIUS!!!

twinnies - your last post sounded like you were having a tough time. How are things now? Are they feeding less frequently or napping any better now? I have to say that the success of feeds in our house very much depends on how well the girls have napped. Took me a while to link the two issues (duh!) but now it all makes sense. I read your other post about when to drop night feeds - this happened for us at about 8-9 weeks. We were feeding them at 11pm-ish, down by midnight and then their next feed gradually became later and later (i.e. 4am, then 5am, then 6am) until eventually we found that we were waking them at 7am. Same with dropping the late evening feed really. We found that it was getting harder and harder to wake them and they were hardly eating anything before falling asleep again. So we gambled one night and didn't wake them at 11pm and they slept through til gone 6am... it was like a dream come true! A good night's sleep AND evenings back with DH - knowing that we didn't have to go up to bed and then feed the girls and deal with vomit before we could sleep.

silver - your babies sound all grown up in their own room!! We are probably going to move the girls into theirs in January - couldn't do it before now as we needed their nursery to house people over Christmas! Vis a vis weaning... I am burying my head in the sand about it to be honest!!! We have had SUCH a tough time just trying to feed them milk up until now that I can't face changing them onto solids just yet! Lots of my NCT friends whose babies were all born around the same time are just starting their weaning now so I plan to let them figure out what to do and then steal their ideas. I will let you know if they come up with any pearls of wisdom!!

I vow to be back on mumsnet more often now (I now have an iphone so can update from wherever I am!) so will catch up with all your news and promise to reply quicker. I feel like I have a bond with you guys after all we've been through that no-one else can understand so don't want to lose touch!

Belated Merry Christmas to you all and hope you all have a fabulous new year!

Hello all,

MrsStevo So good to have your update, your girls sound like dream babies, well done for getting them so sorted. I am incredibly envious of your nighttimes, my babies are 14 weeks, weigh about 9lbs plus and still wake up once between the 10.30pm feed and morning. They do cane a big feed when they do so I dont think they are remotely willing to give it up yet!

Are you secretly pleased Christmas is all done for another year? I am, I found that once we attain motherhood, Christmas, special as it is, is nothing but hard graft for the mums! We had christmas day just us for once and it was great, really relaxed. (The in laws descended afterwards)

Twinnies how did your pre christmas do go?

silver how are yours and the weaning going?

Just before christmas, my girls started sleeping badly - the dreaded sleep regression I think, I could not believe how little they have been napping in the day, but they slowly do seem to be coming out of it now (touch wood), and hopefully will have achieved being able to settle themselves a bit better without milk!

I will have the night nanny again in about a week, I can't wait! Its such a luxury, I was feeling bad about the cost of it, but dh reminded me that it wont be too long before the babies can sleep through the night so its all just a temporary cost, so I don't feel guilty anymore!

Happy New Year everyone, I will be spending tonight (NYE) with as early night as possible!

Hi ladies!

I've not been on for ages! didn't realise so much time had passed with Christmas etc...

Sounds like everyone is in great form! :)

We had a lovely Christmas with the girls:) was so nice to have DH off work and to do lots of fun things with the girls - we walked alot and had nice lunches out and of course did the family things too - we seemed to be out visiting people everyday!

The girls have been great until about 3 days ago -we had a few awful days with Clara - She seems to have been constipated and has had awful tummy cramps/wind :( Poor pet was screaming hysterically - yesterday i had to get my neighbour to come in and help me out as Esme was like an abandoned baby for the afternoon. Thankfully she is much better this evening and has settled to sleep now!

Mr.sS lovely to hear from you! Can't believe the girls are 24weeks!So grown up and you must be so relieved that the reflux has gone!I know what you mean about them still being newborns to you - i was quite sentimental the other day when i packed away all of the latest babygrows they have been wearing. The girls have become huge over the xmas break.Not sure on weight at the moment, might get them weighed in next week or so.

And well done you for getting them to sleep so well! I'm envious. I think i've concluded that they wake more because of the breast milk, it doesn't keep them as full.I have introduced more formula bottles now and stopped expressing and giving breastmilk in bottles so maybe that will help make them sleep abit better, but that being said i'm sure it was the formula that made Clara constipated. we're now on a lighter one since today so fingers crossed!We have had some good nights when they have stretched to 5am now, so it's looking abit better, but every night seems to be different.

Cake night nanny sounds so good! my sisters came on Christmas eve (I'm the eldest of 3)and did the night feeds for us so we could both sleep - that was what i wanted for Christmas! :) Our xmas do was a success - the girls went to bed no problem at 7 and DH and my friend did a quick feed at 11 and there wasn't a peak out of them for the rest of the evening! :) Great to know that we can entertain now! That being said i think we have a sleep regression thing going on now too - they're not very happy going into the cot at the moment!We even took them for a drive to make them sleep this avo as they were overtired and starting to go a bit crazy!

Seems i've written an essay so going to head off now!
Happy new year to you all and all your little beauties!
xxx

Hi everyone,

Just a quick hi and an update, the girls are now 9lbs 9oz and 9lbs 3 oz so doing well. Although both are a bit under the weather at the moment and the little one in particular is off her feeds, which is always a stress! Its feast and famine with babies appetites isn't it!

twinnies it sounds like your girls are on the right track with the sleeping, I keep hearing from other people how their babies spontaneously started sleeping through at 3 months or whatever. Mine are not even close especially with all these bugs they seem to have started picking up!

silver how are your girls doing?

mrsStevo do you still have yours weighed regularly now or do you space the weighings out more now?

Christmas feels like an age ago, in a way its nice to go back to normal!

Hi there everyone!

Hope all is well! Happy new year to you all :)

Cake - really hope your little ones are better now and have recovered from all the bugs - poor little things! Have you been getting any sleep with it all?

We're slowly but surely getting a little more sleep - the girls are happy to sleep until about 4.30/5 now. Then i just nurse them as they wake and they usually settle back to sleep ok! DH is delighted as he is off the hook now with any nighttime feeding! Only thing is they don't want to feed at 10.30/11pm.We split the feed before and have tried many things but i can't seem to wake them up enough, they're just not hungry. I know if i can get them to feed well at that late feed they'll sleep till at least 6am.....

The girls were weighed today at the health centre - they are so big! Esme is 11lbs 1 oz and Clara 11 lbs 7 - can't believe it really! According to the nurse they have already caught up and would just be considered a small term baby size now :)

We're having a twin playdate tomorrow - We're visiting fraternal twins Ruby and Martha - they were in the incubators beside our girls!

Looking forward to all your twin updates!
xx

Cake, Silver, Twinnies ........ any of you still here?

Would love to hear from you if you are. Won't post much for now in case no-one reads this anymore, but my girls (Madeleine and Sophia) are both really well. Nearly 11 months old now and have just mastered crawling and pulling themselves up. Amazing..... but exhausting!

I still think about the trauma of the TTTS, and the whole pregnancy in fact, and think about you all. I really hope you're all well and enjoying twin-mummyhood.

I'm on facebook if anyone else is and wants to keep in touch? Name is Laura Stevens and my profile pic is me holding my beautiful little monkeys!

Mr.s S - I've not been on here in months and months - my girls turn one on Thursday and for some reason i thought i would look on here to see if anyone had popped up too!

I can't find you on Facebook?! There are so many with your name! Can you remember my name?? You might not look on here again....it might be too late!

I will post in multiple births and try to find you there! Silverangel has been around the place in multiple births.Not seen Cake since.

So nice to hear from you! I hope we find each other!!! xxxx

Sorry to hijack but I saw this post and had to add this...I used to teach twin boys (who must be about 18-19 now) who had TTTS and were the first ever twins treated with the laser surgery whilst still in their mother's uterus. At the time it was totally experimental and was quite heavily featured in the news.

They are lovely, clever boys who are really proud of their birth story and are so close to each other as a result. They are constantly looking for opportunities to raise money for research into this condition.

An so pleased all of your precious little ones are happy and healthy. I'm currently expecting but I've only got one in there! Just wanted to offer an interesting fact and also hopefully reassure others that this condition can be managed and beaten.

Hi there! Wow that is some story! - It's wonderful to hear your story, those boys are very lucky!Must have been so scary for their mother, was bad enough for all of us and it's been done many many times before.

Interestingly enough i met a lady who had to be flown to London (i live in Ireland) for the treatment. That was only 5 years ago. Thankfully things have advanced much more here now!

Congratulations on your pregnancy, hope it all runs smoothly for you! :)

hii me and my wife went though this too but lost our childern just over a month ago our doctors treated us like children and was rude and abnoctious little was exsplained to us and they made it seem like it would be a horror story to research it so we where lost as the surgry was happening there was a loud bang what made everyone in the room jump and 4 hour later one passed away we have no idea what the bang was and when we asked to see the consutant we where "stone walled" about a week later she went into labour at 16weeks its was hard as he was brach and got stuck after 10mins of him being stuck they decided to cut her open and remove it but he was there for too long and it caused internal bleeding and he died the next day. my wife who is 17 was made to sign the surgry form with me absent it wouldnt besuch a big deal but im her career because she has a few mental conditions and she cannot make compleately rash disitions.
my questions are from what i know (^above) have i been lied too did somthing go wrong witch is there falt and there covering there arses? and can a 17yrold with mental problems sign that kind of document with the career absent?