Just had emegency laser treatment for TTTS... Scared and lonely.

(35 Posts)
Rowan1204 Wed 20-Mar-13 21:11:11

Hi,
I am 24+4 with Id twin boys.
This afternoon ive just had the laser ablation treatment for TTTS which devoloped quite gradually from 19 weeks but was looking like stage 1 and stable until Monday where it had suddenly deteriorated to stage three. I know some of you here have experience of this and just wanted to share with people who will have an idea of what i am going through right now. The treatment seemed to go well and i am now on ward. Will be re scanned in the morning, and again on Monday. Im just feeling very overwhelmed as we were really starting to feel we were out of the woods , then it all just suddenly went this way. Trying to be positive. Just needed to put this all somewhere. X

Twingirlsrock Wed 20-Mar-13 21:58:35

I don't have experience to share but just wanted to say that I'm thinking of you and I'm sure someone will be along soon with good advice. Xx

chesticles Wed 20-Mar-13 22:13:19

I personally don't have any experience but the lady in the bed beside me in scbu transitional care had had ttts and laser treatment. She like you had a reaaly rough time, but made it to 30 weeks fine.
Thinking of you.
( PS, Rowan for a girl is one of my favorite names)

PigeonPie Wed 20-Mar-13 22:21:14

Rowan, so sorry to hear this. I don't have experience of laser treatment but I do have experience of TTTS. I will keep you in my thoughts and hope you manage the next few weeks.

twinnies26 Thu 21-Mar-13 14:13:35

hi there ,

i couldn't leave your post unanswered, i'm one of four ladies from here who all had severe TTTS and laser surgery (all at different weeks of our pregnancies), my heart goes out to you, you are going through such a difficult time, but like you said you need to try to remain positive (i know easier siad than done when you are the most frightened you have ever been in your life. I remember the feelings only too well.

Four or us had this terrible condition yet we all had 8 baby girls between us smile (which is pretty good statisically!I'm sure they have given you the 33% talk ?)

My girls had TTTS at 17 weeks and i had emergency surgery upon detection. They both made it through surgery and even though they were prepped at 26 weeks with steroids for early delivery, i managed to carry them until 34 weeks in the end. Upon delivery they were in good health all things considered. They were however very small for their gestation, that's how it affected my pregnancy post surgery. The girls also had typical TTTS complexions, one red faced and one white as a ghost. They spent about 3 weeks in ICU and SCBU

Please feel free to PM me and i am happy to chat to you and help in any way i can, even if it's just a friendly/sympathetic ear. Silverangel is often on here and she also has twins with TTTS. some of the other girls will probably see your post too in time!

Your girls are already 24 weeks which is so close to 28 when they are viable so you have not long to wait. I was clinging onto the magic week 28 for 11weeks, hoping we would get there! After having babies in ICU i realise that babies can survive and be healthy and strong even if delivered really early, of course when you are in the moment it is so frightening. Remember babies are so much stronger than we realise and are great fighters.

Are you having boys or girls??

Keep us posted on updates and like i said PM if you feel you need too.

Will be thinking of you and your lovely babies xxx

twinnies26 Thu 21-Mar-13 14:14:00

oh i see boys! sorry xx

Rowan1204 Thu 21-Mar-13 20:23:17

Thanks all.

Twinnies, yours was actually the thread i had found and i actually ended up downloading it for offline reading and reading the whole thing. Honestly, you should have it turned into a book for women going through the condition. Or publish it as a blog even. I found it more insightful and informative, as well as reassuring than anything else I've read!

I had my scan this morning and all looks very good. Twin 1 donor twin already had a visible bladder again and more fluid, and blood flow back to norm. They drained 2 litres of fluid from the recipient twin sack. Both doing well so far (and kicking away!) so now its just the waiting game. Have had a few tightenings but not painful or regular so they are not worried really jusr said to be expected.

Twinnies i hope you and the other girls are still in touch, what a thing to go through together. So nice to hear your girls are doing well x

holidaysdistantmemory Thu 21-Mar-13 20:26:03

Hi Rowan,
so sorry to hear this, such a worrying time for you. Remember you from earlier threads for us who have other dcs. hope your dc1 is ok and you get out of hospital soon to see her/him. Have no experience of ttts but sending you a massive hugs in any event. X

Me23 Thu 21-Mar-13 20:30:03

No experience of ttts but wishing you and your family all fhe best.

silverangel Fri 22-Mar-13 16:47:17

Hi Rowan (and Twinnies!)

So sorry to hear you're going through it but as Twinnies said - we had 8 babies between the 4 of us! I hope things continue to improve for you and they stay where they are for as long as possible.

Totally agree with everything Twinnies said - 28 weeks is the magic marker and you only have three and a half to go. Mine arrived at 31+3 and spent 7 weeks in NICU / SCBU and have absolutley no ill effects to show for the trauma we went through.

Thinking of you and please feel free to ask any questions if you have them xx

twinnies26 Fri 22-Mar-13 18:19:59

Hi rowan ( and silver!)

Delighted to hear the boys are doing well! It will be an anxious wait but it's a really positive sign you have got good results now.thesurgery can be quite effective.

In work waiting for student so quick message! There are also Facebook support groups and an Irish ttts website, just recently set up to inform parents-our story along with others there.guess just trying to give you more positive reassurance that your babies can beat the odds!

Hi silver!!how are you and your little ladies? Would live a proper update! The girls are great,totally wild and crazy at the moment into everything! Chatting away.they are still tiny for their age (are yours?) but healthy and happy!

Got to run!

elisio1 Fri 22-Mar-13 22:24:21

Hi Rowan1234

I also remember you from an earlier thread when I posted about having 2 children already and being terrified about having twins. I think we are at pretty much the same stage- I am also 24 weeks with fraternal b/g twins.

Anyway, I am so sorry that you have had to go through this. It sounds like a horrible ordeal - as if having twins wasn't stressful enough. I'm so glad the scan showed that everything was ok, and I hope you're feeling reassured. I also hope the rest of your pregnancy goes smoothly.

silverangel Mon 25-Mar-13 13:49:47

Rowan, any news? Thinking of you.

Twinnies - have pm'd you x

Rowan1204 Wed 27-Mar-13 18:09:15

Hi all,

So one week on and a scan on monday was positive. Both alive and situation with twin one very much improved. He has lots more fluid and his bladder visible again.
Essentially, the TTTS is cured, only a very small chance of it reoccuring apparently.
My consultant is now mostly concerned with prem labour, as i am only 25+4. Consultant said he wont relax until im past 28 weeks. I can just feel in my body, i know it sounds weird, but i just feel they are going to come early. Im already getting twinges so just praying they hang on until at least 28 weeks.
Has anyone else had such early twins here? I would be really i interested to hear other's experiences.
For now im just very bored sitting around on my bum all say, but of course i know its for the best. Just hard when there's so much to do in prep for their arrival!

silverangel Sat 30-Mar-13 09:49:35

Hi rowan, glad to hear the scan went well on monday. Mine were 31 weekers, I also had a feeling that they were going to be early and literally counted down the days to 28 weeks. My back gave up on me and I was signed off work from about 25 weeks and I literally did nothing for those last few weeks. I think rest is really important - you need to put all your energy into growing those babies as big as you can. I'm sure that's the reason mine were relativley good weights for their gestational age (3lb1 and 3lb3).

silverangel Sat 30-Mar-13 09:52:17

I hadn't finished - I have toddlers climbing all over me!!

We were very luck, the girls had no health problems but we had 6 weeks in SCBU as they were tiny and we had to get them feeding properly.

Will your hospital let you do a tour of SCBU?

Hope you're feeling ok x

HDEE Sat 30-Mar-13 09:54:35

I've had one set of twins at 28 weeks, and one set at 23 weeks. They are all fine now, aside from a few battle scars.

Make sure you have the steroid injections ASAP. They really do make the difference.

twinnies26 Fri 05-Apr-13 21:07:46

Hi Rowan,

Meant to log in days ago have been thinking of you - had a work trip away and then came home to two sick babies so it's been a mad house here.

SO glad the babies are doing well for now - I know that feeling of trying to reach week 28, it seemed like we would never get there. Just rest up and relax (easier said than done) as much as you can.

As you know i carried my girls to 34 weeks in the end, but i had that same feeling as you. I literally felt like they were going to pop out from week 29 or so. Every week when i was scanned they kept saying, 'twin 1 is so low, come up immediately if you feel anything happening' - despite that she stayed nice and cosy until our scheduled section - - i hope your babies do the same!

Through a facebook TTTS support page i know of two ladies who had twins at 24 and 26 weeks, the babies are doing well so far considering the ordeal they have had! It's an Irish facebook page, you could ask to join and ask those ladies some questions if it would give you some comfort and support.

Thinking of you

XXx

Cheerymum Sun 07-Apr-13 16:43:21

Ah found this thread. Thinking of you and sending all good wishes for you.

Rowan1204 Sun 07-Apr-13 17:17:05

Hi all,

Thanks again for your replies and support.

I am 27 weeks today - and had a scan Thursday which showed that so far so good. There is still quite a size difference (about 25%) but they said this will likely remain until after they are born and little one catches up. They are both quite good estimated weights at the momemt though, bigger twin is approx 2.5 lbs and dinky twin around 1lbs 13oz. The fluid has now completely evened out too.

Just feel so relieved that they are ok and hoping they stay cooking as long as possible.
I will be discussing delivery timings with them this coming Thursday as well as a scan and also an MRI scan to check their brains. That is almost the last hurdle for me.
I am currently on cyclogest pessaries every day and they are sending me round the twist a bit! Feel very emotionally on egde all the time and hormonal - i hadnt really had trouble with this at all through the preg until i started taking them. Has anyone else had experience of this?
Thanks x

Cheerymum Sun 07-Apr-13 20:02:50

So glad your babies are still cooking. Not surprising you are feeling emotional after everything you have been through already, and hormonal treatment is bound to add an extra edge to that. Fingers crossed for a smoother ride from here x

Cheerymum Thu 11-Apr-13 20:25:18

Hope all still going well and that you have good news with the scans.
Thinking of you.

Rowan1204 Fri 12-Apr-13 19:01:10

Hi cheerymum,

All is well thank you :-) i have had another scan yestetday and both boys seem good. The fluid around each one has become pretty much even now too which is amazing.
I will be 28 weeks on Sunday so a huge milestone for us and then its just a matter getting all my bits and bobs sorted for the new arrivals :-) so i feel i will be able to get a bit excited at last, although dont think I'll fully relax until they are in my arms x

Cheerymum Sat 13-Apr-13 23:30:12

So glad to hear it c

twinnies26 Fri 19-Apr-13 13:44:18

Hi rowan
So glad to see the babies are doing well and hopefully you will get another few weeks yet before they arrive!

Have been thinking of you a lot wishing you all well - just nots aged to log on things bit hectic and topsy turvy here at the moment!
Keep us all posted!! Xxx

twinnies26 Fri 19-Apr-13 13:44:39

Oh lots of typos on phone!!

silverangel Wed 24-Apr-13 10:11:09

How are you Rowan, hope you're still hanging on to them and doing well xx

bubby64 Thu 02-May-13 16:31:00

Rowan. - When I was 25.4 weeks I was the 4th person in the country to have this at Kings Collage Hospital when I was expecting my now 12yr olds. It was a scary new technique then but I imagine its just as scary and worrying now. Be reassured that this saved my twins lives and I never regretted having it done. (mind you, with 2 pre-teen boys, I sometimes think again!!)
its amazing how well they start to improve after the procedure, and every day thry are getting stronger. Good luck, and it won't be long before they are safely in your arms, then the real work beginssmile

Rowan1204 Sun 05-May-13 11:03:28

Hi all,
Thanks for your messages.
The boys have been doing really well, so much so that the docs got confused about which twin was which as my donor twin has completely caught up growth wise!
I am now 31 wks.
However.... I had a scan Friday and it turns out that the membrane that lies between them inside the sac has vanished. They think its broken - apparently not all that common but more likely to happen post laser than just on its own.
So they are getting them out the week after next, just after 32 weeks! Very scared and now running around like a headless chicken trying to get last bits prepared, whilst at the same time trying to rest as much as possible!

MultipleMama Sun 05-May-13 11:13:20

Good luck Rowan smile

elisio1 Sun 05-May-13 19:41:52

Hi Rowan
Just seen your update on this thread. If you remember, we were twin "twins", as I am also 31 weeks.
I'm sorry you've had such a scary time these last few weeks, and hope that all goes well during the operation. Sounds as though you are in really good and experienced hands.

No doubt you've got a lot to do over the next few weeks, setting up babysitters etc,sorting out last-minute things, which must be stressful.

But it'll all be worth it when they're out safely, and I'm sure they'll be well looked after in the hospital. I hope they can join you at home as soon as possible.
Good luck

twinnies26 Sun 05-May-13 21:22:12

Hi there!

So your babies will arrive next week - that's amazing!

Wishing you the very best of luck and hope the babies spend as little time in NICU as possible! It's great to have got to 32 weeks after TTTS smile

Rest up while you can , the next few weeks will be manic!
Do you live near your NICU unit? I hope you don't have far to travel, make sure you ask for lots of help from those around you x

Keep us all posted on your news!

Xxx

silverangel Tue 07-May-13 13:54:23

Rowan well done and getting them this far - really hope it all goes well for you.

Mine were 31+2, and were fine - small but fine. We had six weeks in hospital, a few days in NICU and then down to SCBU.

Rest rest and rest, and then rest some more - you need to get as much weight on to those babies as possible!

x

Cheerymum Thu 09-May-13 17:40:30

Thinking of you Rowan, wishing you and your babies all the best in the coming weeks xxx

hellswelshy Sat 11-May-13 07:51:16

Hi Rowan,
Only just read this but wanted to just say hope all goes well for you and your boys:-)!
I had a similar experience during my twin pregnancy; my girls developed ttts at 21wks, had laser surgery immediantly in Bristol. Hugely worrying time then followed involving scanning weekly and then i had a c-section at 32 weeks. My daughters were born at 2lb11 &3lb3 and stayed in scbu for 5wks.
Anyway they are now 5 and are doing well, you would never guess they were premature! So what i want to say is stay strong, and i hope you will let us know how you and your little ones are doing. I know from my experience how tough its been for you, but im living proof of how a very drastic situation can end very happily:-) Sending my very best wishes xx

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