TTTS - VERY SCARED AND GOOGLING LIKE MAD

(42 Posts)

Hi, well this pregnancy hasnt been great so farhmm, Ive done my back in, had a SCH, Hyperemisis and 2 bouts of dehydration along with the usual pain in the arse parts of pregnancy smile anyway I am (today) 17+5 pregnant with my (now confirmed) identical twins (mcda) with the bad news that It looks like one of the babies (baby A) isnt doing so well, It looks like it is at least a week behind and has a lot less amniotic fluid than the other baby. so I am being sent to Princess Anne Hospital in southampton to basically confirm my hospitals suspicions, I will be watched for god knows how long then i suspect referred to Kings, in London to have Laser Ablation and I am absolutely PETRIFIED. like most people I have been abusing using Dr Google and frightening myself silly. I downloaded a pdf basically explaining the procedure but even just thinking about it now makes me feel very weepy and the head midwife I spoke to today was nice but very blunt (which would normally make me feel....not better but at least as if I were being told the truth, but the only thing it did was make me feel like I had been kicked in the stomach...scuse the pun)
is there anyone out there who can offer advice, a word of comfort? I know there are other ttts chats but, well i feel a little selfish today.
i also have a few questions to ask
1. what should I ask the consultant tomorrow?

thats about all the questions I can think to ask at the moment sorry but my mind is racing!

Many thanks in advance

twinnies26 Wed 25-Apr-12 21:54:58

Hi Kate,

This is just a short reply as off to feed my twins in a few mins but i didn't want to leave your post unanswered.

So sorry to hear about your complications sad My ID girls (now 7mo) are TTTS survivours. Like you at 17weeks i was diagnosed with TTTS stage 2 and had surgery that day.

While you are awaiting your consultations stay away from google as much as you can. It really does more harm than good with this condition. You will only work yourself up too much. Yes - it is a very serious condition and yes unfortunately there are some shocking statistics out there and many babies do not make it BUT there are also many babies who DO make it and end up thriving once on the outside! I was on a TTTs support thread, four of us all had surgery and in the end we all had 8 babies between us.Great happy endings smile All our baby girls made it and arrived with no more than the average premi problems smile

It's a terribly worrying and emotional time, be kind to yourself and above all try to remain positive, it's all you can do. That being said - i will admit to you i think i am still distressed emotionally from the whole experience. If i let myself think about it i am still overwhelmed, thankfully with my DT's there are rarely moments when i can reflect back on the whole pregnancy.

Must go unfortunately. You can pm me anytime or any other questions just ask.

No time to answer re your consultant questions. Will try come back sometime
Thinking of you and wishing you well
Xx

twinnies26 Wed 25-Apr-12 22:03:00

btw is a bladder visable on baby A? What are the fluid levels?you will be amazed how some babies can still survive in minimal fluid. FYI There are some people on an Irish Multiple Birth facebook page who have been clocking up the weeks without surgery- one baby has been in only 1.5cm of fluid and now increased to 3cm. He is still growing despite this.

Hi, thanks soooo much for your reply. Well I have just got back from Southampton and they have said that it looks like either (early stages) of ttts or a thing called selective iu growth restriction (basicall it means that when the portions of placentA and membranes were handed out - baby A got a small amount - and therefore a. Will be a small baby but it has nothing to do with dwarfism x baby As bladder was seen and he (found out they were boys today)did a wee on the screen - and was wriggling around quite happily. Baby As liquor was 1.3cms and baby B's was 4.7 so quite a difference but baby A wasn't stuck to the walls - I am being sent to st Georges in London rather than kings and they will decide then whether I will need to have the laser ablation so its still fairly serious but seeing them kicking today was very encouraging x

Hope that all made sense x and also I have found reading the ttts thread that you were on really helpful x it is still very very scAry though. Xxxx

londonmum123 Thu 26-Apr-12 21:15:24

Hi Kate, can't offer any advice on TTTS, and so sorry to hear that you are having a touch time, but just wanted to say I had my twins at St George's in Tooting and the team there are absolutely fab - you'll be in very good hands. Will be thinking of you x

Thanks x having read twinnies26 tuts thread I instantly thought I would be sent to kings, and I had never heard of st. Georges so was a bit scAred (I still am) but now that you've said that it reassures me. X

*ttts lol

hellswelshy Mon 30-Apr-12 09:04:24

Hello there, sorry to hear you are going through a tough time, its very scarey i know. I was told my girls had TTTS at my 20 wk scan, and it was at a critical stage so was referred to Bristol for lazer surgery that same day. I was very frightened as it was so sudden (we didnt even know the girls were identical until this point, due to a mistake on first scan). When we got to the hospital, we were given all the stats and they are grim when you read them in black and white. We were given all the alternative options, but when faced with losing the babies we knew we had to go ahead. Only had 20 minutes to decide what to do, but I think me and my husband agreed straight away.
Had the surgery and stayed in overnight, the lovely nurses let my husband sleep on a mattress next to me on the floor - would have hated to be alone. The surgery wasnt painful and i was awake for it by the way; as well as the lazer ablation they also drained a litre of fluidshock

The days that followed were anxious, but the scan the next day was positive, and when i got home i could actually feel the babies move more and more - previously there had been so much fluid around them i couldnt feel them as well! I was then scanned every week from then on at the hospital and even though the improvement for the growth of the babies took a few weeks, it got better and better. I finally had my girls at 32 wks by c-section as my body had enough, as had they!

They are now 4 years old and are happy healthy and bright. Please go with your instincts, dont google - very little info out there apart from tragic stories i found - and keep speaking to the people on here who have experienced such amazing care and treatment from the hospitals. Feel free to ask anything & good lucksmile

twinnies26 Mon 30-Apr-12 22:19:52

Hi KAte any news? been thinking of you and wishing you well! smile

Hi we went to London yesterday (st Georges rather than kings) and I was scanned by professor Basky (brilliant man who myself and my husband have fallen a little bit in love with) who has said that this isn't ttts but selective intra uterine growth restriction they have said that whilst this is still very risky I have been put as high-low risk. The babies still could develop ttts but the prof doesn't think that it will happen and I will be watched intensively until I am 22 weeks when the risk apparently goes down. They have also said that because baby b (the bigger baby who we have named Nathan) is growing "normally" that all their focus and attention will be solely on baby a (the smaller baby who we have named Jarrett) and as soon as he slows down or becomes distressed they will get them both out. Selective intra uterine growth restriction is VERY rare but the fact that they have survived this far is promising (they have gone through quite a lot already). ;) I am just praying that I can get them to at least 32+ weeks to give them an even better chance. Because of all the stuff that's going on me and my husband have started buying/preparing stuff but we have no idea about sizes twinnies26 when your girls were born was there much difference clothing wise? What would you recommend to buy for preemies?

Also, twinnies26 and hellswelshy I know that what's going on with me is different from you guys but did you still see your regular midwife? Or did you just stick with your consultants? I have tried calling my midwife (she is always unavailable or uninterested) so I don't know whether should bother? X Kate x

londonmum123 Wed 02-May-12 21:02:39

Hi Kate - thanks for the update. Have been thinking of you. I'll keep my fingers and toes crossed that you manage to keep them in for as long as possible.

Prof Basky is brilliant isn't he? I had a bit of a crush too. Glad you're under his care.

hellswelshy Thu 03-May-12 08:14:28

Hi Kate, good to hear things are sort of stable at the moment - will send good thoughts your way and hope you keep them in till 32 weeks! Size difference of my girls was minimal - 2.11 and 3.3 and even the prem baby clothes were too big! If they stay in hospital for a few weeks - mine were in for 5wks - they had a good stash of prem clothes though, as they like to keep all the clothes boil wash clean so dont worry too much about that. Also my girls were in incubators and seemed to be 'sunbathing' in nappies most of the time smile

Re midwife, like you i had a different one every time they visited, and so after my lazer surgery, had an appointment with my consultant once a week anyway, at the Heath in Cardiff, who was amazing. So, from my experience, with her input and all the nurses in that department i wouldnt have thought you would need a midwife from now on - multiple pregnancies are dealt with better by hospitals i found and i felt more confident that they had seen it all before. Up till that point i felt quite isolated re midwives and doctors as i didnt feel anybody was really aware of the risks of a twin pregnancy...just felt safer being looked after by the hospital. See how you go, dont be afraid to voice concerns, ask questions - you know your body and your babies better than anyone! Stay in touch x

Thanks hellswelshy smile I am just about to speak to a midwife to say that I don't think im be needing her services (or lack of) any longer. As soon as twins (specifically id) I think that it should be all hospital care. And wow there really wasn't much difference between them I don't know how im going to be not being able to dress them but I guess the incubators are there for that and thAt the clothes that we buy will last a good deal longer than they did for my daughter. Londonmum123 prof basky is my new crush and he was very charming and lovely (of course this could be down to the fact that he was giving us fairly good news and all the pregnancy hormones working) x I will keep everyone posted as my next scan/appointment is on the 9th in Southampton. Xx

Ps excuse lack of grammar/coherence didn't get much sleep last night.

Albaba Thu 03-May-12 15:51:25

Hi Kate, just to let you know that i was in exactly the same position as you. I have 8 month old ID twin girls. Pregnancy all seemed to be quite normal at first. Had all my appointments at the Hospital fortnightly with the Consultant. Then things started to go wrong for me. Thought at first that I had TTTS. The Consultant was very focused on their bladders and said that in TTTS one of the twins would be 'stuck' Got past this stage and TTTS was ruled out. I had IUGR in Twin 2 and discordant growth between the twins. This was a big concern. Had 4 lots of Steriod injections to build their lungs up as it was likely that they would be born early. Started going to see the Consultant weekly at the Hospital. Instead of the difference between the twins getting smaller it was getting bigger at each scan. Consultant talked in percentiles which I didn't really understand but there was quite a big difference between them which wasn't good. I was admitted to Hospital at 31 weeks and they did daily CTG scans and doppler scans on alternate days to check the flow of blood between the babies. Discharged from Hospital and admitted again a week later for the same thing again. I had no End Diastolic Flow to Twin 2. Had Emergency CS at 33 weeks. Twin 1 born at 4lb 7 d and Twin 2 at 2lb 11. Twin 1 spent 2 weeks in Neo-natal and Twin 2 4 weeks. I googled all the stuff about my condition and the outcome didn't look great but we have been there and got through it. Still there is a noticeable size difference and people question you when you say that yes they are identical. Twin 2 still on special food to promote catch up growth but getting there. Good Luck.

Hi Albaba sorry to hear that you have been thru this as it is very scary, and im glad to hear that your babies are ok now. There isn't a lot of info about iugr at all(I have been banned from googling about it from my hubby and prof Basky) so living week by week is a bit of a nightmare. Your story sounds so similar to mine. I just hope that my boys can be just as strong. Did your smaller twin always grow or did she sometimes stop, my babes are growing at about the same pace even though there is the size difference. What risk were you put at? Any other information that helped you at all? Sorry for all the questions xx Kate xx

Albaba Sat 05-May-12 10:06:48

Hi Kate. I was scanned at first fortnightly then weekly then just before I was admitted to Hospital I was being scanned every day. Twin 2 was still growing but at a minimal amount. Twin 1 was racing ahead and progressing but Twin 2 was only putting on maybe a few ounces between scans. This was my problem that instead of the gap between them getting smaller at each scan it was getting bigger. I was at quite a big risk. Only my DH and parents knew the full story. I used to come home from the Hospital and cry down the phone to my Mum that more things were going wrong. My Consultant was excellent. He spent a lot of time with us and I felt that I was in good hands. I was monitored very closely and he said that he had to weigh up the options and see if the babies stood a better chance being still inside me or being delivered. He told me to expect delivery from 30 weeks so getting to 33 was better than I had thought at the start. There was no chance of me having a natural delivery which I was quite relieved about! On the day of delivery I had a scan about lunchtime, things weren't good and babies delivered a couple of hours later. It all happened so quickly I didn't even have time to panic! You sound like you are in good hands with the Prof. Expect lots of scans. I would imagine that you will also have lots of doppler scans too to measure the flow of blood between your babies. Also there if nothing that you can do to help the situation. I asked I thought maybe If I took certain foods or vitamins this would help but there is no cure for it as such. Good luck and keep us posted.

twinnies26 Mon 07-May-12 20:45:33

Hi Kate sorry i've not been on this thread in few days - re midwife, after my diagnosis and immediate surgery i never saw a midwife again, i was scanned weekly for the rest of the pregnancy by my consultant and his sonographer. Was essential like for you that dopplers and growth scans were done regularily as things could have turned for the worst at any time.

My girls were both small dt2 1.6 kg (3.6) and dt1 was 1.3kg after birth.Not a huge difference as a result of TTTS, it seems according to my consultant that it continued to affect them both with growth, we were always falling off the growth charts. I bought set of premi vests on ebay last minute and also bought 3tiny premi baby grows from mothercare (but they were way too big). Like Hellw (hi!think we've been on same thread before!) they spent most of their time in incubators in their nappies or then later in only a vest. They only wore tiny grows when they were moved to cots.

Hope your babies will hang in there to 30 weeks plus! Take it day by day, every week you gain is fantastic.

Keep us posted!xxx

Hi all, my baby boys are 19+2.
I am just going to write what the report says on here but they are stable at the moment and ol still be having weekly care until they can be delivered (preferably not too soon) but all is looking good at the moment even though baby a (smaller) is in only 1cm fluid.

fetal wellbeing scan:
fetus 1
Head circumference -142.0mm
Abdominal circumference - 112.0mm
Femur length - 23mm
Heart action present. Presentation cephalic. Amniotic fluid: reduced. Amniotic fluid index:1.0cm. Placenta anterior high, structure normal.
doppler
Umbilical artery: PI 1.06
Enddiastolic flow: positive

fetus 2
Head circumference - 156.0mm
Abdominal circumference - 139.0mm
Femur length -25.0mm
Heart action present. Present cephalic. Amniotic fluid: normal. Amniotic fluid index: 4.4cm.
Placenta (as above)
doppler
Umbilical artery: PI 1.10
Enddiastolic flow: positive

diagnosis
fetus 1
Selective IUGR. Appropriate growth and normal Doppler.

Both babies have grown along their textiles with twin 1 smaller, measuring below the 3rd centile. Both bladders seen. The liquor remains reduced around twin 1(max. 1cm pool depth). The liquor is normal around twin 2. Both ua Dopplers normal. The limits of ultrasound scanning have been explained. For repeat scan in 1 week including anatomy.

Hope this makes sense for everyone.

I have also been told that I need to see/keep in contact with my midwife for some strange reason and I have been told that if I can get them far enough along, they could be born in my local hospital. This is still amazingly scary even though the past two meetings with my consultants have been positive. Thanks to hellswelshy, Londonmum123, albaba and twinnies26 for all your info and support as it's been so helpful.

I will keep you posted again as to what it going on as my next app is on the 18th xx

Hi all, sorry I haven't been on this thread but we have had a bad couple of days. I went for my weekly scan on the 18th and my little baby (baby a) was completely stuck to the walls with no bladder function. Unfortunately, the only appointment available to do anything was this Monday just gone (21st). I had a scan again and they said that I would need to have the laser ablation surgery (kind of new this anyway) the next morning. Got booked into ingleby house on the grounds of st Georges hospital and prepared for the worst. Our op time was booked at 8:30 with the brilliant Prof Basky performing the surgery. Everything surgery wise went extremely well even though it was the strangest thing either me or my husband have ever been through and the laser "popping" inside my belly was worrying and weird. The only good part of the op was that we got to see one of the baby's backs and a very fast moving leg. Couldn't feel any pain initially, but as soon as I got up (after they had put the anti contraction patch on) my belly felt so tender with some of the worst period like pains ever, that they gave me pethidine, which knocked me out completely. Woke at about 10 had some food and fell asleep again until about two-ish when it was lunch time (my babies seem to know when it is feeding time) had some lunch and went for the scan to check the babies and Both were/are alive! Obviously we have a nervous wait to check them again - I believe my next app is the 29th but I have a cheeky scan booked with my local hospital for tomorrow (25th).

Also, as soon as prof. Basky was finished with my surgery he was off to Sweden to talk about my case of ttts (and others) but he had already written the report saying that the babies had survived the surgery. He really really is a brilliant man. Obviously our little baby still may be affected by the intra uterine growth restriction but because of this surgery prof. Basky believes that this should "help" somewhat. Anyway, hope this has kept you guys updated, if you have any questions don't hesitate to send me a question. X

Cerubina Wed 23-May-12 19:23:25

Didn't want to read and not post - so glad to hear that initial response to the ablation looks so positive and hope this continues. Poor little ones and you, it must be so scary and feel really out of control! I met Dr Basky just once when we went in for a scan with ours but he was great and glad to hear that he's done such a great job with you. Fingers crossed for a very smooth remainder of your pregnancy xx

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