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TTTS no laser treatment, one dead, one survived, anyone been through this?

(6 Posts)
Taplow75 Sun 07-Jul-13 23:34:03

Long story short, through failings of a terrible scanner and consultant OBS at Chelsea and Westminster we missed our chance to save our miracle identical twin girl, and are just left with her sister. The odds for Brain damage without laser surgery are 35%, if we'd had laser 5%.
So anyone been through this, we are continuing, I've had a scan last week, where the amazing PRof Kypros Nicolaides, who is the best person anyone experiencing TTTS can ever see, anyway, he has said he can't see any brain damage as yet, but I have read that it is never 100% and that things could manifest themselves even after the baby is born, I am worried about Cerabal Palsy, and brain function.
Are there any survivors of TTTS out there that didn't have laser, and your surviving twin has faired ok? I am hoping we will have a normal kid, and I totally trust Kypros, which is one of the only reasons we are still continuing with the pregnancy, but I would just dearly love to hear that someones baby has really been ok, beaten the odds, and got to toddler years with normal development and no issues. Or not I suppose, if you had normal scans, normal MRI and the baby still had problems that would be useful to know. I read the statistics, but its not the same as going through it or making the decisions.
Not sure if anyone will answer this, because I imagine if you have had a healthy survivor your probably not talking about it on forums and you've just got on with life.
Many thanks for your time in advance.

Rowan1204 Tue 09-Jul-13 21:30:11

Hi there,
I didn't want to read and run.
I am so terribly sorry to hear of your loss.
My boys did suffer ttts, and we had laser treatment at UCLH at 24 weeks. We were very close to losing out donor twin and there were concerns over the recipient twin possibly having some level if brain damage, due to the surge of fluid and blood pumping through him.
We were very lucky to see on an MRI scan that things looked ok.
Im so sorry that your diagnosis happened this way, and you didn't have the chance of surgery. What is your base hospital?
I cannot comprehend how you must be feeling.
There is a Facebook support group for uk ttts parents. Many on there have one survivor. You need to search for 'ttts support uk parents' but there are nany knowledgeable people in there and lovely people on there. You may find more help or advice there.
Many i ask how many weeks you are now?
So sorry again that you've had to go though this x

Rowan1204 Tue 09-Jul-13 21:32:51

Sorry just realised you did say your hospital. I hope thatwhatever the reason was for them failing you with this, will be dealt with properly x,

silverangel Wed 10-Jul-13 11:27:41

I'm so sorry for your loss Taplow.

I had successful laser with Prof Nicolaides and he is absolutley the best person you can see in this situation. The CP is a risk of TTTS regardless of the surgery for both the donor and the recipient but particualrley the recipient.

My girls are now two and absolutley fine - there were some queries regarding the recipient's heart and we had to have some extra scans and they did ECGs when they were still in utero but there were ultimatley no problems.

Sorry again that you are having to go through this x

Linguaphile Wed 10-Jul-13 13:24:37

No experience to offer, just wanted to say that I am so very, very sorry for your loss. sad

jewels4u Thu 12-Nov-15 16:54:55

Hi I know it's a bit late in the day for me to reply but I was wondering how things are...I have a 10year old daughter who survived ttts in 2005 and she finds it very difficult not having her sister here. X

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