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Twin-Twin Transfusion Syndrome(320 Posts)
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.
I had the laser ablation treatment in January 2004 at Kings College Hospital for TTTS. I was 23 weeks pregnant and had been showing signs of TTTS from about my 16th week of pregnancy. I was devastated and no-one understood how important it was to me that both babies survived and not just one. The Dr told me that if I decided not to treat the condition, the smaller twin would die and if the bigger twin survived he would be brain damaged due to the excess fluid. So we went down the laser route. A few hours later, I had a scan and the babies appeared well. 10 days later I went for a scan to see if the babies had survived really and both babies were doing well, still a significant size difference but the fluid surrounding both babies was pretty much the same as it had been when I left Kings. I was scanned every week from then onwards and the pregnancy went well. At 34 weeks my waters broke and they were born naturally. Twin 1 was 5lb 6 and twin 2 was 4lb, so a huge difference. Apart from being early and small they were perfect. They spent 2 weeks in special care as they were slow to feed and needed to put on some weight. hey have suffered no effects of the TTTS and next week they turn 7 and are a right pair of cheeky boys. But twin 1 is still alot taller and heavier then his brother. When I had the treatment I asked the Dr if there was anything I could do to help the babies and he said it was now down to nature and to keep my fingers crossed. You have done the main bit in helping your twins survive, now it's just waiting to see if treatment has worked. I was given a 33% chance of them both surviving, 7 years ago. The percentage was partly because it was quite a new treatment then and not many women had had it done.
Sorry posted before I'd finished. Please, please stop looking on the internet, it's really difficult but you'll scare yourself even more!
So sorry to hear about this, it must be very stressful for you. I have no experience of this but watched a TV programme last month called 'Emergency in the Womb' which was a documentary following mothers in your position. It may be interesting for you to watch - it was on BBC2 so may still be on iPlayer.
I must add I didn't watch the end so am not sure how the babies in the show got on, but I wish you all the best of luck with the rest of your pregnancy.
Flipping heck, how stressy! I can't imagine how hard that is! Have you registered with TAMBA and looked on their message boards? They're a v friendly bunch and there's always someone who has been through such things. Mine are DCDA so not at risk for this and at was still v stressful! Very best wishes, hope everything progresses nicely. X
I'm 16w with id twins and it's my worst nightmare. I want to wish you all the best for you and your babies (and your dh). x
MrsStevo, a friend of a friend went through this recently and despite being told that one twin had a very low chance of surviving both little boys are now out of hospital and doing really well.
I hope you are coping ok, it must be really hard just waiting and knowing there is little you can do. All I can say is rest, and KEEP AWAY FROM GOOGLE! It will send you mad! Like BagofHolly says TAMBA is brilliant and I'm sure there is a lot more experience on their message boards, and they also have a lovely helpline who you could phone. Tonight even, if you want to chat to someone.
Emergency in the Womb is on 4OD - def worth watching and perhaps getting an appointment with Prof. Nicolaides at the Fetal Medicine Centre. It is amazing how he helped one set of twins in utero by separating their blood supply.
Hello, I wonder if anyone is still looking at this thread.
I am 18 weeks with identical twins and my routine scan today showed stage 3 twin-to-twin transfusion. I am devastated. I'm trying to carry on as normal as I have two other little children, but this is hard.
Just wanted to post it really, to get it out.
I'm watching this thread. I hope MrsStevo had good news at the next scan and is doing well.
Just in case there is anyone else watching this thread and concerned, it appears MrsS is much more chirpy. She wrote this on another thread on 19th May:
"I've been discharged from Birmingham now and am back under my Lincoln consultant. Babies looking good size-wise but what was the bigger baby with lots of fluid around him/her now has considerably less fluid than the other one. Apparently that means that when they did the surgery they didn't laser the placenta exactly in half and the little baby got the bigger half. They think the fluid difference is still within normal ranges though so still aren't panicking."
Thank goodness for that. All fingers crossed for a successful birth now! x
Cake I can't offer advice as I've not been in this position. I hope that you have a good outcome for any treatment you have. I know twins in their 60s who had TTTS. They are very different sizes but both well and happy. In those days TTTS wasn't even diagnosed until after the birth.
I hope your situation works out just as well.
Fingers and toes are crossed for you CakeForBreakfast.
What has been offered as the next step for you? Have you been referred to a specialist as MrsS was?
everything crossed for you MrsStevo.
Regarding your food worries - your best bet is to physically relax (i know it's hard to mentally relax) and eat a normal diet.
taking extra supplements certainly won't do any harm, and it'll help you keep your iron levels etc up. (make sure you get ones that are for pregnant women)
sorry, didn't look at the date
CakeforBreakfast - maybe you could PM Mrs S and talk to her about it?
especially as it looks like she's feeling more chirpy now.
Don't you just love sarcasm?!
Her posts sound much more positive. That better for you nickelbabe?
sorry, i didn't mean it like that
I meant that MrsS might not mind talking to someone going through the same thing, now that she knows (well, as far as we know) the babies are okay.
Ok! Sorry just a bit sensitive today, as I keep getting my posts pounced on!!
it's okay, I understand
(i always worry about offending people, so wanted to point it out before you thought I was being a complete bitch )
Cake - I had laser ablation for severe ttts three weeks ago, in fact on my way to kings now so excuse spelling and typing on phone! Have you to have treatment? When we were first diagnosed it was horrific, told we pretty much had to have surgery there and then to save them both and three weeks on, so far so good.
There is a thread in ante natal which is Mrs S's story and mine at the end.
If you have any questions please feel free to pm.
Sending you hugs and lots of positive thoughts xx
silverangel I'm really pleased to hear 3 weeks on you are doing ok. What was the experience of the laser treatment like?
I think looking back, bizarre would be the best way to explain it. I was terrified for my babies but it didn't hurt at all, had a local anaesthetic in my abdomen, they inserted the laser thingy and blasted away. It took about 20 minutes altogether. When they had finished the laser they aspirated 1.5 litres of fluid from the recipient twin's sac. I watched it on the big screen and got to see the baby which was amazing.
Afterwards had to wait an hour for a scan - both had heartbeats and we were sent home. The next four days were awful, it was a waitoing game to see if they had survived, when we went back for the scan seeing them both move around was the hugest relief...
Oh wow. What a frightening thing to go through silverangel, It sounds like it was quite low key too, I have googled too much I think, and am expecting spinals and a catheter, full on theatre gowns etc.
is this your first pregnancy? Can I ask, how you had been feeling before you found out the babies had TTTS. I noticed a sharp increase in bump size but put it down to having just 'popped'.
renaissance nickelbabe and buttonmoon, thanks for posting, can someone link mrsstevos thread or bump it as I can't seem to find it!
I noticed my bump had got bigger but just assumed it was because it was twins (first pregnancy so nothing to compare it too), it was also very hard. After they drained the fluid I felt so much better without realising I wasn't feeling great in the first place if that makes sense. I was also getting really breathless which I have since read can be an indicator!
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