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 everyone,

Hope you're all still doing well!

Support belt has made a huge difference to my back - can actually move around now which is such a relief, also got given some pilates based exercises to do which are probably helping too.

I have no hospital appointments this week - feels very bizarre, back next Monday morning.

I've been trying to find myself a project too Mrs S - have decided I am going to collate all my recipies that I have collected from magazines / papers and put them into some sort of organised folder. 36+6 is fantastic, I bet the next three weeks go really fast!

Hope everyone has a good week x

Hi all,

MrsStevo I am thinking of you. I hope you get good results, and going for 36+6 is incredible.

I had a growth scan today, I am 23 weeks. Results were good. But I sensed something from his vibe. He was adamant the babies were behaving and growing but I scoured my notes afterwards (as you do!) and noticed one of the twins Pulsatility Index has increased from last time and Abdominal Circumference had dropped a few centiles. I don't know what that means, but I don't know how long I can resist google!

I sometimes think I am my own worst enemy!

xx

Hi Cake,

The PI for mine has been all over the place - at the very first scan (12 weeks) they said it was high, it was highest from memory for one of them at 1.43 but at last scan it had dropped down again. My consultants says its fine as still within 'normal' range. Also the centiles for adf and bpd have changed each week - I haven't been too concerned as overall averages are ok and last week one of them was squashing its tummy with its arm so it is going to throw up a slightly different measurement. Its also down to the skill of the sonogropher and assuming the cross section is taken from the exact same place last time.

Don't worry! (How come its so easy to say that but to actually do it is completely different?!). X

cake, take one step away from Dr. Google immediately. If the doc said that they were fine then they ARE. My babies have constantly varied in their abdo circumference - in fact 2 weeks ago the bigger baby dropped quite a lot but had picked up and was back on track when I was scanned on Friday. I hadn't even heard of PI so I've just had to google it (it's allowed if I'm just checking what something means!!) and have deduced that that is what the doppler measurements are measuring. That being the case, I know mine have also varied - the measurement was at the high-end-of-normal last Tuesday but was fine again by Friday. These things vary, it isn't an indicator of anything bad happening and - if it were - the doctor would have said and would be whipping you back in for another scan in a few days like mine do. Are you being scanned weekly or fortnightly now?

I second what silver says - Don't Worry!!!

MrsStevo and Silver Thanks for your reassurances, I did give myself a bit of a stern talking to for stressing when there was no real issue, and decided not to be such a worry wort, I'm on the approach for the first milestone of 24 weeks, then I just have to get the babies to behave until the next real milestone of 28 weeks after which time I will be singing and dancing (well, jiggling un-elegantly whilst looking for biscuits).

Appetite of a shire horse. Anyone else like this?

(btw, scans so far are weekly, if next one goes ok, it will go back to fortnightly)

Appetite of a shire horse - that made me laugh!! I did, up until a couple of weeks ago so about 25 / 26 weeks - now I don't seem to have as much room as I did to actually squeeze the food in. Which is probably a very good thing so I dont end up resembling a shire horse:)

Good on you cake for being so strong! 24 weeks is a milestone in itself but I know what you mean about 28 weeks ... that's when I had in mind that I would start celebrating. I had the shirehorse appetite issue at that point in pregnancy too ... I was even getting up in the night to eat! I recommend hoofing a load of porridge in the morning, and before bed, to keep you going.

These days I'm eating at actual mealtimes most of the time ... with the occasional chocolate brownie-or-3 inbetween. Have got to 34 weeks and only put on 2stone 8lbs though which I consider to be quite reasonable!

Cake i know what you mean about approaching 24 - that's been a target of mine too! I'm about a week behind you with the pregnancy. My eyes are also set on the big 28! Great news that if all is well next week you will be on fortnightly scans, that's a real positive step :) - my consultant suggested it about three weeks ago but at that stage i was way too stressed to be left alone without a checkup so been in every week, was only three weeks post surgery then. If all well next week maybe i'll follow in your footsteps!

Babies were doing really well yesterday, wasn't a growth scan as had that the week before but everything is normal which is great. So i'll get some reassurance for a few days and then probably start worrying about Sunday night for the next scan as usual!

Cake i am STARVING all the time! i'm like a constantly grazing sheep these days, but i am going with it!

MrsStevo hope all goes well for you this week

silverangel so glad you're back is much better! Mine is killing me today, sharp daggers in lower left top of bum - first day or real discomfort, hoping it will pass in few days.
xx

mmmmmmm. Porridge. Cracking idea. Good for you too Silver it could squeeze in the gaps!

Hope you are all feeling well.

Nobody would fetch me a biscuit today while I was in the garden after dinner. Thats what happens when you've already had two pregnancies, since I had to get my own damn biscuit, I took 4.

cake - I can't believe that you had to get your own biscuits!!! What a bloody cheek! I'd have taken four and then hidden the rest so no-one else got any!

twinnies - great news about your scan last Tuesday. I know what you mean about starting to worry again a couple of days later. You must have another growth scan tomorrow? Hope it goes well and babies are behaving and growing well.

My scan on Friday also went well - although they couldn't measure the babies' brain ventricles again as neither baby was lying in the right position. They've estimated the babies are around 4+1/2 lbs now and should be about 6lbs when they're born (TWO WEEKS TODAY ) . Although everything looks ok, I am about 50% excited and 50% anxious about how they are going to be when they arrive. I would give anything in the world for them to be healthy but can't relax about it at all. I think I have a default setting of anticipating doom at the moment - anything better than that is a bonus I suppose!

Hope you're all well x x x

Hi all,

MrsStevo Juts 2 weeks away, thats so cool. And over 6 lbs too, thats such a good weight.

I know you must be anxious, time is getting near. Its so natural to not quite believe everything is ok until you see the little ones with your own eyes, I'm sure though that just like the surgery we had, the anticipation of the outcome is worse than the outcome!

How is everyone else feeling?

Hello,

Two weeks Mrs S - wow!! 6lb is a great weight too. Based on no scientific reason whatsoever I am reckoning on mine being smaller than that. Of course you're going to be anxious, I think anyone having a baby would be but after everything yours have been through its perfectly reasonable. Are you organised / names chosen etc?

I'm doing well, saw an osteopath last week and again today who has done some sort of miracle work on my back, walked into town today which I haven't been able to do for ages and going to take the dog for a walk this afternoon. My next growth scan is wednesday and seeing consultant too - will get date for section then!

Cake / twinnies - have you got scans this week?

X

Hi ladies!

Mrs.Stevo - two weeks!! i'm so excited for you - understand the anxious feelings but think how your babies have already proved they are little fighters so i'm sure they'll continue to be strong at the end of the journey and at the start of life on the outside! Are you all set? Are these your first babies? Do you have everything organised?! Congrats on the estimated weight - that's a fine healthy weight! :)

Silverangel so glad your back is feeling better! Great to know they can work miracles - i'm just waiting for the day when mine is going to completely seize up - the niggling is getting worse and worse - physio for me on Monday so hopefully that might help abit!

Scan is tomorrow and yes a growth scan so hopefully they will be happy enough with their progress. Hope to see the head twin consultant too (although briefly i'm sure) as he's back from his holidays - so fingers crossed all will be well! They are jumping about like mad these past few days. Today in the car while at lights i got a kick that made my cardigan pop out - was super excited about that being my first pregnancy and all so had me smiling away :)

Cake you're in tomorrow as well? Hope it goes well!

xx

Hi all,

No scan for me today, my consultant is going to be away for 3 weeks, so I am having a scan on Friday instead just before he goes.

Silver is your back problem still the sciatica? I have SPD, by evening, one hip does not really want to take any weight, nothing doable about it though just one of the lovely many pregnancy niggles. I heard that things get ugly in 3rd pregnancy and oh my word, my legs are sprouting varicose veins, its terrible!

MrsStevo am thinking of you. So close now...

Twinnies fingers crossed todays scan shows your little squirmers are growing wonderfully

Hi all,

Didn't come out with a gold star today i'm afraid :( Got to see the consultant as he is back from holidays which was good... twins are doing well re fluid levels,hearts,brains etc.. But consultant not happy with growth, they don't seem to have done that much growing in the past two weeks. Twin 1 is 'under weight' and twin 2 is in the normal bracket but on the low side....... so now of course i'm freaking out that they won't grow enough in next two weeks and we might be in trouble.

I asked what would happen if they weren't happy in a fortnight and he said it's still too early to consider delivery and that maybe they might need to 'intervene' again if things don't improve - which might mean more surgery or draining - - so of course i've been freaking out since lunchtime and in hysterics for a while at the thought of even the possibility of more surgery. I just feel i can't cope with the stress of all that again and worry for them sooooo much :(

Anyway they are stable and doing well apart from the fact that they are too small....... don't have a scan next week - back in two weeks now for a growth scan. He said that as fluid levels had been equal and normal for 6 weeks i could come back in 2 weeks.

Did anyone elses twins do this???

Hope you are all doing well xx

Oh Twinnies, sorry to hear that. How many weeks are you now?

I guess its a good thing that they dont want to see you for two weeks. This hasn't happened to me but I do remember my consultant saying that even after the surgery there could be growth issues as when they are doing the laser they can't tell if they are splitting the vessels to give each twin an equal share of the placenta so say they ended up splitting it 60/40 or something like that it could account for the slower growth of the twin 1. Was twin 1 the 'stuck' twin?

Did they do the dopplers as well?

xx

Hi silverangel

i just lost the battle with my curiosity and googled silly i know. Just looked up some weight charts for twins and went through my chart - I'm 23wks + 2 and the twins are 1 pound and 1 pound 1 ounce - babies if averaging well should be 1pound 7 by weekend so i'm probably quite a long way off according to the twinstuff.com website. Won't be googling again just really wanted idea of what averages are.....

Yes i guess that could have happened - unequal splitting of vessels and now they need to watch for twin to twin happening again. Twin 2 was the 'stuck twin' and she is the bigger of the two now. It was always the other way around.

I only realised in car home that he didn't do dopplers today and i thought i had done really well asking him all the necessary bits and bobs - made him go through brains,membranes etc... with me - i presume him not doing it meant there was nothing to worry about - i hope.....agh!

Anyway fingers crossed they'll do some growing for me in the next two weeks. I guess i should be reassured that he said i could take a week 'off' but now i'm just abit frantic now about their size and lack of growth.

Cake you are only a week or less(?) ahead of me - what size/weight are your babies if you don't mind me asking?Are they girls also?

xx

I just looked back through my notes and I had a detailed scan at 23+3, twin 1 was 1lb1, and twin 2 1lb3, resulting in an 11.3% difference. The notes at the bottom say 'fetal growth normal'. So, I don't think you have much to worry about! I also agree with you re the dopplers - if they thought there was a problem they would have done the PI.

Interestingly, my stuck twin is now the bigger twin as well.

Cake - my back issue has turned out to be just a muscular issue around my hips - its not sciatica and so far no sign of SPD. I feel for you having that as I have been pretty much housebound for three weeks - my osteo is the best discovery I have ever made. Walked the dog twice today:).

X

silverangel i wrote a reply but it disappeared on me somehow - in short- thanks SO much for looking that up for me. That's really reassuring for me mine are only 2ounces smaller which isn't a huge amount. Funny how there's actually little in the difference but you're noted as 'normal' and i'm underweight'. Anyway - i think that will help me relax a little.

Sometimes i think my consultant scaremongers quite abit - i guess he's covering his back, but i always get the worst possible scenarios from him. I was so upset this afternoon after hearing even the possibility of repeat surgery if they don't grow quickly enough now.....

Anyway, delighted you are up and about walking :) that's really super! we had a lovely walk this evening too :)

Thanks so much again for taking the time to look at your measurements for me!! xx

Aaaaaargh. I just wrote a big post and it also somehow disappeared!

Anyway. Twinnies I am so sorry you had a scare today. Perhaps your consultant is indeed being a bit over cautious. Anyway to put your mind at rest even further my babies weights are also almost identical to yours and Silvers...

... Last growth scan was last week when I was 23+1. The estimated weights were 488g and 541g (I think 1 lb 1oz and 1lb 3 oz respectively). Plotted on the centile graph they are both close to 50th. My consultant is happy with their growth so far. (Mine also girls)

I posted last week just after my 23 week scan too in a bit of a panic, one twins PI had increased and that twins Abdominal Circumference (and indeed weight) had dropped a teeny bit on the centile chart. However the doctor said all was fine so I am trying not to worry, I am hoping Fridays scan will be a growth one and will also be OK!

How are you doing now?

Hi Cake great to also hear your babies are not that much bigger - i presume 2/3 ounces isn't a huge difference babywise. Although in grammes seems much smaller - 450g twin 1 and 489 twin 2. Anyway i'll have to give them a good talking to so they can do a better job of growing for next scan!

sorry that you also had a panic - these babies are really causing plenty of drama! Mr.Twinnies is of the opinion that as we are all scanned every week we know every single minute detail and that in a way it's too much - many things change/fluctuate in pregnancies but when one isn't monitored as much as we are these little changes often iron themselves out without any fuss - so I'm hoping that will happen for us and you!

glad to know we are only a few ounces out anyway and glad at least they are 1 lb and not under that.

good luck on Friday,hope it goes well! xx

My friend had this condition with her twin boys six and a half years ago.

It was a bit touch and go and they were very premature..(about 28 weeks i think)
They are now fantastic,healthy six and a half year olds with no problems.

One of them did have a few physical problems in his very early years but all is well now.

Good luck.

twinnies - so sorry you've had an afternoon of hysterics and freak outs, I've been exactly the same after every hiccup since TTTS was diagnosed. I can't offer any reassurances size-wise since they aren't able to properly estimate weights at my hospital (Lincoln are ruuuuuuuubbbish!), but I can say that one of my twins' growth dipped about 4 weeks ago now (it only grew .9cm in 2 weeks) which was very concerning but it had picked up again at the last scan and was back on track. Both my babies are between the 25th and 50th centile - the smaller twin has always been only-just above the 25th centile (although went way below when TTTS was diagnosed). My point is that their growth may well dip now and again and then pick up. My consultant told me that the growth is only ONE indicator of babies thriving - so long as fluid levels and dopplers are ok then they are clearly getting enough blood flow from the placenta. If fluid levels are just about equal then the babies are just-about getting equal amounts of blood flow so the laser surgery was probably quite close to 50/50 division. It sounds very promising to me that the consultant didn't even DO a doppler and doesn't want you back for another 2 weeks - he evidently wasn't concerned about blood flow at all. Try not to panic too much (WAAAAY easier said than done, I know) - and don't forget that these scans are never 100% accurate anyway as the measurement of the abdo circumference is not always taken from exactly the same place and might be slightly squished.

I second what Mr Twinnies said - all of our babies are being scanned WAY more than your average baby so any minor fluctuation is picked up that would normally go un-noticed in an average pregnancy.

Thinking of you though as it is horrible to even have to contemplate more surgery. We were faced with that at 25 weeks when their fluid levels were vastly different but, again, they sorted themselves out without intervention.

Hope the rest of you are all ok. I'm exhausted and my back is knackered so i'm off to bed!

Morning all,

Great post MrsStevo I agree we are monitoring our little ones so intensely, and after all we've had to go through, it is normal to desperately want everything to go smoothly now - the babies like to tease us now and again though!

Incredible really how similar the sizes are of babies between us all isn't it. I hope your doctor doesn't scare you too many more times twinnies but it is true if he had concerns you would be back in after a week for dopplers and he hasn't needed that.

I am feeling sorry for those of you with back problems. I can feel the strain in my lower back now more, I think partly because of the way I have to sit/stand at the table to avoid my torpedo bump getting in the way!

Love to you all. x

reelingintheyears thanks for your post -great to hear another success story from this condition!

morning ladies - thanks all of you for your words of reassurance - i was probably letting my emotions and fear just completely take over yesterday - it's just all the thoughts of 'what if's' that drive me mad! Mrs.Stevo you must have also been terrified at the thoughts of more surgery too - please god we also won't have to face it!

got a new little mantra for the girls 'grow - grow - as fast as you can like you've never grown before!' just in case they need a little encouragement!

i asked my consultant about my back yesterday and got what i might consider a typical male response - 'well it's very normal unfortunately and you are having twins' only words of advise i got were 'take some paracetamol' Going to physio on Monday so hoping that will help a little.

I also now have numbness in my hands at night - anyone else got this? Did abit of reading on it and it said musicians and people using their hands are more prone to it - so I'm obviously the perfect candidate Another lovely symptom of pregnancy to add to the list!

Anyway thanks ladies for all your words of reassurance - much more relaxed after knowing that weights are similiar enough. Great to have you all here xxx