TTTS twin to twin transfusion

[Aliceinwonderland5]

Does anyone have any experience of this?

I was sent to London this week for the laser ablation surgery. The twins survived the surgery and we have another scan next week to see if they have made it. I'm only 17 weeks pregnant so I think it's going to be a long process. Any success stories?

Hi there @Aliceinwonderland5 . We just wanted to bump this thread for you in hopes someone who has had a similar experience may be along soon. We'll keep everything crossed for you for your next scan in the meantime.

I haven't but my cousin did. I don't think she had the laser though. The boys arrived at 30 weeks weighing under 2lbs each, they spent about 10 weeks in nicu and the smaller one on oxygen for a couple of months after that. They are now 5 years old and healthy and happy.

There's a twin forum on here, you may have better luck there.

Also look up twin trust. There is a community there and likely to have more people who've been in your situation.

Hi Alice, I have just been diagnosed with TTTS and I'm 25 weeks. I'm being referred to King's this week. I'm sorry you're going through this. It's such an unknown time. I've read lots of positive stories on here but they are very old, from 2011. Sorry I know it's not that helpful but perhaps we can talk to one another to support one another through the journey.

@HebeMumsnet Thank you!

@Bells3032 I'm glad to hear they arrived healthy, especially without needing the laser!

@Adeana1 my consultant said the later it happens the better the outcome, and I think 25 weeks is considered quite late. Did they say what stage they think it is? All the luck in the world for your referral to kings, I had my laser at St georges. My next scan is Wednesday so I've got my fingers crossed they're both OK and then will go from there . There's a really helpful Facebook group for UK twin to twin transfusion parents!

@Aliceinwonderland5 thank you for your reply. Wishing you well for Weds and the remainder of your pregnancy. They think it's stage 1 but twin 1 has had low amniotic fluid identified. Around 3cm deepest pool since my 20 week scan. Twin 1 has distended kidneys and the fluid had not increased as it should have. I'm being seen at King's tomorrow and I've been advised that if I require the procedure, they will do it tomorrow also. Can I ask what the name of the group is on FB? I'd like to join.

Hi, I was one of the first 'guinea pigs' to have the laser at Kings. DTs are 11 now and smashing it in Y7.

Mine was discovered at 17 weeks too, they did it there and then or it would have been too late.

They were delivered at 31 weeks due to placental abruption probably triggered by the laser, we had 61 days in NICU / SCBU for them to grow we had no major health issues apart from size. They were 3lb.

I knew something was wrong before I went for my routine scan, T2 had 0.5ml pool and I had to have cardiology scans on both babies.

Happy to answer any questions or queries you have about the process / procedure. Be prepared for a lot of people to be watching the whole thing and to see your babies in utero on a big screen, you can ask not to if you dont want to. Wishing you all the best.

@Adeana1 the group is called Twin-to-twin transfusion syndrome UK parents. It has a green cover photo.

I had my scan this morning and they are both happily still kicking away and my smaller twin has actually caught up and they are now the same size, which is really positive as last week there was a 20% size difference between then. The laser worked and they both now have deepest pools of 4cm, before the surgery it was 0cm for one twin who was 'stuck' and 7cm for the other.

From what I know now, they won't do the laser unless one pool is under 2cm and the other over 8cm (or6cm if you're less than 18 weeks). I would say go prepared to have it that day as my ttts advanced rapidly over a weekend so I think you're best to be prepared for all outcomes at every appointment.

You're in good hands, and stage one is very manageable! I know its so so scary though.

@AriettyHomily
I'm sorry, I've only just seen your message!

I'm glad to hear that your twins made it through! 31 weeks and all that time in NICU must have been scary for you

@Adeana1 how was your appointment?

Hi @Aliceinwonderland5 it went better than expected. Professor Nicolaides found that the babies had an 8mm size discrepancy and whilst twin one barely has any amniotic fluid their lungs have developed to the expected size. He actually suspects bladder extrophy is the reason for such low fluid around the baby. Twin 2 has 8cm of fluid and he was concerned about that. He said that my bump.was fairly soft and thinks the babies' presentations because of twin 1's condition. I have to be monitored with doplers every two weeks but on the whole I'm hopeful things will continue to progress and the babies can grow as big as they can before they arrive. The mental toll is just what I'm finding hard to manage right now. How are you getting on?

@Adeana1 that's good news! I hope it has continued that way?

I was referred back to my local hospital as both babies are doing well and so far so good. I'm still having a lot of scans but I can feel them move now so each week gets slightly less stressful as I'm less worried there won't be a heartbeat at each scan.

The mental toll is difficult as you say, just try to take it one appointment at a time. Its hard to enjoy the pregnancy when you're so unsure whether you'll take both babies home.

Hey @Aliceinwonderland5 hope it’s all going well still, we are a more recent success story, TTTS and the laser at week 17, managed to get to 27 weeks before they came - long stint in NICU but we just celebrated their first birthday a few weeks ago. It is scary but try to stay positive we found that helped a lot - also lots of pints of squash to help with the fluid (fairly certain there’s no medical benefit but made me feel useful to have something to do to ‘help’!) best wishes and fingers crossed for you.

@Adeana1 we were at Kings - great facility - for our procedure, best of luck to you too

Wishing you all the best. Can I recommend you familiarise yourself with your NICU - the Neonatal network for your area will have info and maybe videos - lots of twins even without TTTS spend time there and it is always good to be informed, it helps with the shock if it happens x

@Doub1eTroub1e hi! I'm so happy to hear of your success story. I've heard a lot of ttts survivors come very early after having had the laser so this is something I'm worried about. Can I ask did your waters break at 27 weeks or did they bring them out for another reason?

@October2020 thank you, I will most definitely have a look as I do think they will be spending time in the nicu.

Yep the risk of the premature rupture of the membrane is the most common side effect from the procedure and that can cause early labour. We lost fluid about an hour after the procedure so thought we may have come to the end of the road, but didn’t go into labour and the fluid gradual came back over the next few weeks. Then the waters broke again at week 27 and we went into labour. Couldn’t definitely put that second time down to the laser treatment as there were a few other complications going on - plus it’s a multiple birth so a number of possibilities for coming early.

@Doub1eTroub1e Gosh I'm so glad that your twins made it through all of that!
I'm scared to exercise or have sex in case my waters somehow pop as they were very clear that we are now high risk for premature rupture of membranes and early labour.