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In 2007, we found out we were expecting baby no 2, a little boy, at our 12wk scan were found out that something was wrong. He was 1 in 5 risk for Downs Syndrome, (which surprised us because we are both young, but didnt overly bother us, yes it was a shock but we were still having our little boy) we refused the have the ‘fish test’ (amnoi test) until three weeks before his birth and at our 20 week scan we were told some news that did a little more than shock us, we found out that he didnt have ds, but a rare congenital heart defect, our little man was going to be born a fighter, he had Hypo Plastic Left Heart (where the left side of the heart fails to form properly) Transposition of the Great arteries (TGA), a small VSD and a coartation of the aortic arch (the arch was too narrow to supply blood to the rest of his body). This was an eye opener to say the least, and we did the mistake that parents do we googled the statistics (it was a sad few months after the googling). During the pregnancy we were referred from our closest hospital to the Mater (who are absolutely beautiful staff), However on our sons due date Prince Charles (where they did peads. cardiac surgerys) was closing for a month whislt they moved over to the Mater, so we had the choice of going inter state or having him early and staying in QLD for his op. He had his first 6hour open heart surgery at 4 days old, and with only a few little hiccups (nothing major) we were out of hospital a month later, he had a cardiac cath. done at 7months an overnight stay turned into 5 nights and surgery a week later. his second open heart op was at 7 months old and we were out of hospital 4 days before christmas (only spent 11 days in). his 3rd (and hopefully final) op was early this year and 16day in hospital. and his now a pink boy with more energy that anyone knows what to do with. and apart from the cool tough kid scar he has on his chest you couldnt tell that his plumbing is any different to any other child out there. his proud of his scar and shows it off any chance he gets.


Posted by emilycost, 6th September 2013


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  • Cool, tough kid scar, I like that!

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  • that is the spirit !

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  • thank you, yeah the fish test wasnt as bad as i thought it would be, am i glad everything turned out fine too, our little man has a normal life ahead of him, although theres not much information regarding HLHS kids after 20yo,

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  • I’m so glad thing worked out for you. I went through the fish test and it was awful ad tribes out nothing was wrong with bub

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