TRAPS syndrome

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We went in for out very first ultrasound yesterday only to find out not only are we having twins but they have traps syndrome (twin reverse arterial perfusion sequines syndrome) basically, one of the baby's does not have a heart but is staying alive by using the healthy twin to pump it's blood.
So now the healthy twin is at risk of heart failure due to over working ....I know this only effects 1 in 35000 pregnancys but I was wondering if anyone else has been through this? Any advice would be helpful