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TTTS - Any advice? **trigger warning**

(18 Posts)
HettySunshine Sat 07-Jul-18 21:18:38

One of my friends has just been diagnosed with twin to twin transfer syndrome.

I know a little about it and have read a little more today so I know it's an horrendous diagnosis, she had mentioned laser surgery and that they may be delivered at 23 weeks but she's totally destroyed and not making s huge amount of sense.

She's only confided in me so soon after her diagnosis (which she got on Thursday) because I had prem twins (although not identical and at 33 weeks). Her husband works in Dubai and is unlikely to be back in the country for at least 2-3 weeks at the earliest.

She moved back to her parents with her 2 dc yesterday and is trying to understand everything but I was wondering if anyone could tell me a bit more about the condition, the treatment she may be offered and most of all, i'd absolutely love to hear any stories with positive outcomes if anyone would be happy to share.

I really want to support her as much as I can with however her pregnancy proceeds.

RubySlippers77 Sun 08-Jul-18 13:14:55

Hi - my twins aren't identical but I have a friend who has identical girls who did experience TTTS. They were delivered early (I think around 33 weeks) but have just turned 3 and are absolutely fine smile

Please contact TAMBA, they have tons of info about this and have recently done more research, I'm sure they could help you/ your friend a lot!

aperolspritzplease Tue 17-Jul-18 18:56:27

I had TTTS, diagnoses at 20 weeks and had laser surgery that day. They only had a 30% chance of surviving. Delivered at 31+3, due to placental abruption, possibly caused by the laser.

They're 7 now, and you would never know!

Happy to answer any questions but second TAMBA for good resources.

loopylou1984 Wed 15-Aug-18 13:00:58

My twins had ttts at 22 weeks and we had laser surgery the very next day. Despite a couple of scares they made to to my planned c-sec at 34 weeks.

Stay away from google.

TTTS is basically an uneven sharing of the placenta. One baby (the diner) gives away all the blood to the other (the recipient). Typically the doner will be smaller with little amniotic fluid and the bladder may not be visible. The recipient will be bigger with too much amniotic fluid and possibly a strain on the heart. The laser surgery effectively divides the placenta by fusing the joined blood vessels. They can also drain excess fluid at the same time or separately (amino reduction).
The surgery has high risks but usually it is only recommended if doing nothing has higher risks.

I hope this helps you understand, and feel able to support her better.

loopylou1984 Wed 15-Aug-18 13:01:56

Just realised how old this is! Hope your friend had a positive outcome

Missluck693 Wed 19-Sep-18 05:56:34

Hi everyone.
I'm a newbie here obliged to talk with women in similar situations after my recent 20 week scan.
I'm also blessed with a twin pregnancy and have been diagnosed with TTTS at 20 wks with a disparity of 17 %. Fluids look normal. Doctor has warned about the disparity increasing and possible need for intervention if the disparity increases. Needless to say I'm feeling sick to the bone.

Has anyone been diagnosed with a similar disparity rate at a similar gestation time and was wondering if things destabilised or how they panned out? I'm not going to Google any more.

Thank you in advance

loopylou1984 Thu 20-Sep-18 21:44:52

25% disparity here at 22 weeks. However fluid was definitely not normal (12ml for recipient and 1ml for donor) and so we had laser surgery at Kings the next day. We were extremely fortunate and I carried them to 34 weeks and they are fit and healthy 20 month olds now.

If you're on Facebook there is a marvellous group called twin to twin transfusion syndrome uk parents - with some very knowledgeable ladies with various outcomes and stories. Highly recommend it.

ileclerc Fri 21-Sep-18 23:06:45

I think from memory -+ 15% is the point of concern. If you're not already push as hard as you can to get under a fmc, depends where you are I was lucky that I was at kings in London. You need to be scanned weekly, if not more. My ttts survivors are 7 now, we had a 30% survival rate. Please ask me any questions you have.

ileclerc Fri 21-Sep-18 23:07:43

@sammylou1 glad you're under kings!

ileclerc Fri 21-Sep-18 23:11:03

@sammylou1 read that totally wrong. So glad it was a positive outcome! X

loopylou1984 Thu 27-Sep-18 12:57:17

Thanks ileclerc. Glad for you too.

Random but you're not Kent based by and chance with a younger child of around 19 months?

ileclerc Tue 02-Oct-18 18:56:44

@sammylou1 Kent based but absolutely nit with another child- couldn't handle it!!

loopylou1984 Tue 02-Oct-18 20:03:35

I met a grandmother with her 19 month old grand daughter at a playgroup the other day. Her son has 7 yr old twin girls who had TTTS and were treated at kings!

Missluck693 Tue 02-Oct-18 20:19:45

Hi all

I just found out at my 22 weeks scan the condition is actually IUGR type 1. Intrauterine growth restriction. The smaller twin is in the 10 percentile. They've asked me to come back for another scan next week where they will give me more info and perhaps ask me to make a decision on baby 2. I'm sick with worry.

Would be useful to know of other IUGR experiences

willisurvive3under2 Wed 03-Oct-18 23:33:47

@Missluck693 My Twin 2 had IUGR but it was only diagnosed at birth. Not sure why but the scans didn't pick it up - estimated weights of both girls were very similar. At birth she was over a pound smaller than her sister. All was ok though and went home on day 4. All she needed was a glucose drip for a few hours. x

comradelouise Tue 16-Oct-18 21:47:09

@Missluck693 I'm pregnant with twins at the moment, but my first daughter had IUGR. She was estimated at 3rd centile during the pregnancy, born at 34 weeks and everything was absolutely fine. She was 0.4 centile for a while after she was born, but now she's 21 months and enormous. I wish I could stop her eating!

Good luck and please don't worry xx

Missluck693 Wed 17-Oct-18 02:34:02

Thanks all for your inspiring stories.

Came back from my 24 weeks scan. Both babies are low weight. Baby one is near 10 percentile but still considered within normal ranges and baby two in 5 percentile. All other organs and Doppler readings seem fine. Disparity is 25% now.
Except 1 new bombshell. Both babies now have suspected enlarged ventricle in brain which they wish to investigate further. Nearing 10mm. Have been referred for fetal MRI scan and further bloods taken from both me and hubby. Measured low risk for downs and Edwards syndrome earlier on. Additionally no intervention deemed necessary by professor from king's college at this stage. My consultant did tell me this is likely to be a pre term baby. When I asked how much she didn't commit to an answer but seemed to think it could even be less than 30 weeks!

I don't know what to think anymore. First I was hospitalised with severe hyperemisis which is now under control with meds. Then I'm told I have suspected TTTS. then I'm told it's not that but I have sIUGR. After some consulting I'm told of all risk options include letting the stronger twin have a better chance of survival. Then I'm told about the Ventriculomegaly. And then told it's likely this will be a very early birth.

I'm riding on the emotional rollercoaster from hell and won't wish it on anyone. Family mean well but the advice they all seem to be giving me to eat more is frustrating as if miraculously the babies will balloon if I double my calorie intake (I'm very healthy normal BMI).

So your inspiring words keep me going

comradelouise Wed 17-Oct-18 21:53:46

Oh @Missluck693, you must be all over the place emotionally! If it helps I was too on first one: diagnosed with Edwards syndrome at 12 weeks so we didn't think she'd survive, then it turned out it was just in the placenta but that meant she'd be premature, 28 weeks onwards - but then I managed to just keep hanging on up to 34 weeks and it was fine.

I also have a friend who went into labour at 28 weeks and her son is now 97th centile! Met lots of mums in the NICU with babies born before 30 weeks, and some were having ventilation, but everybody was just getting bigger and stronger. I'm sure you've already been told this but it really is amazing what NICU can do these days - survival and recovery rates have gone up and up over last couple of decades.

Have they offered you any counselling? I got offered some on NHS with my first one...might help if your family don't quite get how you're feeling?

Big hugs xxx

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