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  1. #1
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    Default truncus arteriosus questions

    Hi everyone,

    We had our 20 week scan today (our 4th baby) and it revealed that bubs has truncus arteriosus. We have been referred to a specialist in the city for more testing (we are in country SA), but I've got so many questions now I'm sitting at home thinking about it (they kept asking me if I had any questions today but my mind was blank ). So if anyone has had a bubs with this and wouldn't mind telling me your story, I'd very much like to read it because at the moment I'm in tears and feel so alone

  2. #2
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    Sorry I dont have any experience with truncus arteriosus but i could not read your post without answering.

    Wish I could say something that would give you comfort. I have been in a similar position after a 20 week scan and remember the overwhelming feelings.

    I will say that Drs know an awful lot about the heart and they can do amazing things diagnosing and planning surgery from scans.

    try and get some sleep and write down any questions you can think of...I had trouble even speaking when talking to specialist as I was very upset.


  3. #3
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    Hi

    I dont have a child with Truncus but my son does have a CHD called Hypoplastic Left Heart Syndrome which has required 2 x open heart surgeries and a cardiac catheter, he is about to turn 4. Try Heartkids.org.au they will have an amazing team to speak with and can probably get you in contact with someone local in the same boat as you. Also try facebook for Truncus arteriosis pages. Good Luck

  4. #4
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    Firstly huge . It's never easy to be confronted with a heart defect diagnosis. Although I cannot share any information on TA (my son had a very complex and rare combination of heart problems), I do know what it is like to feel so overwhelmed and the feeling like you've had your whole world tipped upside down after a CHD diagnosis. Don't worry about not asking questions straight away. Write them down as they come to you. Also, try not to worry about the future so you dont overwhelm yourself with information overload. You'll also find that the more information you get, the more questions you have afterwards for the next few months. I just have one word of advice - Don't Google!!!!! You'll freak yourself out unnecessarily.

    Harps has already suggested Heartkids. Their website has quite a bit of useful information and they're also fantastic for hospital support once baby is born. They also put you in touch with other parents of heart children and hold regular information meetings and events for the whole family. Well worth looking into.

    We also have another thread in this section of Bubhub specifically for heart mums. Feel free to post in there any time if you want to ask questions or just chat with mums of children with CHD. They are lovely bunch and very welcoming. And they all know what its like so you can cry, scream, shout in there and they all understand. Hang in there. It's a bit of a rollercoaster ride initially but it becomes easier to cope with as time goes by.
    Last edited by TeenyT; 07-01-2012 at 17:58.


 

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