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A close friend of mine has just had a scan and has a possible diagnosis of Twin Reversed Arterial Perfusion. Has anyone had any experience with this and/or hopefully any positive outcomes?
I am trying to do my best to help her through this but really don't know much about it or what I can possibly do to help her. I feel pretty useless at the moment :(
Sounds like the twins are identical? It is also called Twin to Twin Transfusion. What it means is that one twin is getting the majority of the blood from the planceta where the other is getting very minimal, both situations are major health concerns. Depending how far along she is, the degree of placental flow etc. will depend on the health of the babies.
Very stressful time for her and unfortunately not always a happy ending :(
Yes, they are identical. One twin apparently has a heartbeat but the other doesn't but is still sucking blood from the healthy twin - sort of like a parasite. So one twin is alive but the other is not :( There is a vessel attaching them.
I hate to say it, but the outcome is not great. Unless they can do laser surgery and block the sharing vessel between the babes. Horrible horrible! I'd never wish twins on anyone, I've seen too much go wrong!
How sad to have one lost twin still inside your friend.
I knew a mum who had twin to twin transfusion and she was flown from Adel to Bris for surgery on her placenta to correct it! She was about 26 weeks then I think. Both twins survived but came early with one nearly twice the size of the other.
Maybe they can do something like that for your friend and her surviving twin?
Wishing her luck. Just be there for her and be open to talking non-stop about her situation one moment and then not at all the next - try and be led by her.
Good luck
Hi Nai.
The outcome isn't always bad, so please try not to stress. It is an awful diagnosis but sometimes there can be misdiagnosis with TTTS or even with it being early stages it may not progress.
I'm not sure if you followed but Mum's twins had early markings of TTTS and she was monitored weekly and all considered scheduling for laser in Brisbane. In this case it corrected itself and although born early the twins were of normal size. Some effects were there, I think the slightly smaller one had some liver problems - but most of the others were related to premature birth.
They will monitor your friend closely - it may not progress (:pray:) but in some cases it progresses very quickly and dangerously. I have read a story about a woman who was diagnosed at 17 weeks and by 21 weeks there was severe developmental differences in growth.
Anyhow, the only good news is that if it does severely progress - in this case the laser surgery would be less 'risky' per se if the other twin has passed. How sad for your friend though.
All my thoughts and wishes. xo
Thanks for your advice - we have good news! The scan today revealed that the healthy twin is ok and the non-viable one is disintegrating naturally so will be reabsorbed by her body. They will be keeping a close eye on her though for the rest of the pregnancy.