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Critical Aortic Stenosis

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Lynnbrum
Lynnbrum

Louis is 3 years old born 25.05.04 diagnosed at 2 days old with Critical Aortic Stenosis - Open Heart Surgery on 01.06.04 - Ross Procedure with replacement of 12mm Contegra valve conduit from RV to PA, and 15.06.04 Plication of left hemidiaphragm. Louis will need further surgery to follow approx age 7-9 years (fingers crossed not any sooner !!!!). Medication - Asprin Daily

1 like, 3 replies

3 Replies

  • Caela1989
    Caela1989 Lynnbrum

    Posted

    Hi do you still check this post .. ? I want to know how your little one is .. I give birth to a little boy last year who had the same we didn't find out till he was 5 week old and close to passing away ..he ended up with heart failure too .. The awful thing is you feel like your the only one when something like this happens .. It's heart breaking .. 
    • Lynnbrum
      Lynnbrum Caela1989

      Posted

      Hi yes , still get emails . Louis is doing amazing ! He had his last surgery earlier than expected in 2010 at the age of 5 pulmonary valve replacement , open heart surgery in and out in 5 days ! He still is doing amazing now 10.5 years old . He is due and MRI next year to see how the pressures are in the heart . Hope your little boy is doing ok ? 
    • Caela1989
      Caela1989 Lynnbrum

      Posted

      Aww that is amazing ... Bless him ... My little boy had balloon catheterization to stretch the valve which was successful with mild regurgitation .. He has scans every 6 month at alder hey childrens hospital .. Doc said things like this are very unpredictable some children need more surgery some don't .. He said only time will tell ... I can't help but live every day as though it's my little boys last and it's really really getting me down I'm finding it hard to cope as I hVe that much fear ... Was you like that ?? Is what our boys hVe classes as a mild heart condition ? You have managed 10.5 years if no doubts ups and down with worry .. How have you coped any advise would be truly apreciated ... Thankyou for your speedy reply ... 
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