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I have 2 kids with truncus arteriosus, am I alone?

  • 1.  I have 2 kids with truncus arteriosus, am I alone?

    Posted 04-03-2024 14:58

    Hi, I'm mum to 3 kids (+ one on the way) my eldest is 18 he was born with truncus (diagnosed at 4 days old, repair at 6 weeks old, endocarditis at 12 year old with repair and aortic valve replacement shortly after),

    a heart healthy 15 year old

    and a 13 year old daughter with truncus (diagnosed prenatal at 20 weeks, repair by emergency surgery at 6 weeks old, repair, new patch and aortic valve replacement at 12 years old)

    im pregnant again (scary at 37) and waiting for the 20 week anomaly scan. 

    doctors have told me that im one of 2 parents in the uk to have 2 children with truncus arteriosus, that it isn't hereditary and purely just bad luck (apparently the odds are similar to be struck by lightening in the exact same place 2 years apart) it's very lonely to be told this, sort of makes the world feel like a huge ocean you're navigating alone!

    my kids are older now and hopefully out of the worst of it, settling in to their warfarin regimen and moving on from the trauma I lived for so many years (I have stacked PTSD from everything that's happened to them). My 18 year old is doing great, figuring out his life and what he wants from it. My 13 year old is struggling with INR instability because of her hormones but this is minor in reality when compared with the other stuff she's endured

    im just wondering how alone I am…is there anybody out there who can relate? I should be a pro at this now but I'm worrying about their future, what does it mean for 

    Stacey Wright