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  1. #1
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    Default Abnormal morph scan.

    We are currently 20 weeks with our first Bub and have found out at morph scan that baby significant heart issues, overriding aorta, ventricular septum deviation and likely hyperplastic left heart. We will he having further tests next week including an echo, amniocentesis and appointments with a paediatric cardiologist.

    I was hoping somebody might have some insight into this stuff. @Tamtam am I right in remembering your daughter has cardiac issues?

  2. #2
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    No experience but sending huge hugs xx

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    mummymaybe  (09-01-2016)

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    I have no personal experience but HeartKids runs a helpline that could probably give you information and support or link you with someone who has had a child with similar conditions.

    http://www.heartkids.org.au/

    Good luck and hugs x

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    mummymaybe  (09-01-2016)

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    Hi. you remember correctly. My little girl has hypoplastic right heart and a few other bits and bobs.

    What an awful shock for you. I remember that morph scan news like it was yesterday. Sending big hugs.
    Are you being referred to lady cilento. ...
    Feel free to pm me if you want to chat.
    How are you holding up over the weekend?

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    mummymaybe  (09-01-2016)

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    Hey hon, no experience with heart issues but my darling boy had severe growth and skeletal issues that didn't appear until the morph scan so I know what it feels like to get bad news at the scan where everyone thinks nothing ever goes wrong.

    I really feel for you. My only advice is to make sure you're happy with your medical team - both their medical expertise and ability to communicate effectively with you.

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  10. #6
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    @Sally1981 thank you, we have a wonderful team and luckily our ob delivers that the mater so we don't need to change. I agree I truly thought we were fine and although a little nervous didn't think we would find anything.
    @Tamtam thanks lovely. We have been referred to Dr Alex Gooi and will see him at mater than bub will go to lady cilento after he is born. It sounds like he is the go to guy for these little kids.


    The hardest thing is just not knowing how serious things are it sounds like the vsd and overriding aorta can be easily fixed but the hyperplastic stuff sounds pretty grim.

  11. #7
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    @mummymaybe
    We love Dr Gooi.... We had him all throughout our pregnancy through the Mater, and we actually went privately with the birth and Dr Bretz at Arrivals delivered my little girl. He was so good with my heightened anxiety and I would cry nearly every check up as we got closer. We were getting growth scans and heart scans constantly.
    Do you mean hypoplastic? Where the left side is undersize and not growing? That's what my daughter has on the right side. I have several friends who have kiddos with hypoplastic left, they are rambunctious thriving kids... There is a lot of hope. My advice? Read and research the internet for stories but remember there are always lots of stories of hope, with many difficult journeys, and that Dr Google is not always the best source of information, BUT is super helpful in learning stuff.
    I pretty much read every single blog and page I could find online! My daughter has had the 2 of the 3 surgeries they do for kids with underdeveloped ventricles, but her first was not the norwood, which is the usual course of action with HLHS.
    Anyway, don't get too ahead of yourself until you see Alex, if you haven't seen him already, he talks fast! Take a notebook, don't be afraid to stop and ask questions. He'll have his lovely cardiac nurse with him usually - her name is Karen and she is just lovely and very caring and supportive.
    Not sure what else to say, I'm here... check in when you need to. IF you want to read about our story please check out my daughter's facebook page (I heart baby love...) or our blog which I can't really link. but it's a wordpress site - all one word ' iheartbabylove'....
    You'd have to go back to the start to read from pregnancy! I've been writing it for over 3 years so it's a bit long.

    I've rambled long enough.... but please don't hesitate to chat/vent/pm me...ask anything.

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  13. #8
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    Yes sorry hypoplastic, my bad. Thanks so much I'll pop over and check out your blog now.

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    Quote Originally Posted by mummymaybe View Post
    Yes sorry hypoplastic, my bad. Thanks so much I'll pop over and check out your blog now.
    Is okay. I just wanted to make sure I understood you.
    I'm here if you want to chat. xo

  15. #10
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    Hey @mummymaybe
    Just wondering how you're doing and if you've seen Alex yet for your scan.


 

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