Mended Little Hearts Open Forum

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  • 1.  Introduction/New Member

    Posted 01-19-2021 15:47
    Hey, Y'all! I just joined this group and thought I would introduce myself. I'm Stephanie, I live right outside Charlotte, NC.  My heart warrior son will be 2 years old in March, and he was diagnosed with Shone's Complex at 6 weeks old.  We were completely unaware and unprepared at the beginning of this journey, especially since he was not diagnosed in utero even though I  was followed very closely by MFM due to him not growing; It wasn't until his pediatrician detected a heart murmur at 6 weeks.  

    To say this journey has been crazy is an understatement.  In his first year of life; He has had a thoracotomy to repair Coarctation of the Aorta (at 7 weeks old),  a Mitral Valve replacement (at 10 weeks old), Subaortic membrane removal (at 11 months old), blood transfusions, and a G-Tube placement (at 4 months old).  Also, his last OHS back in March 2020 was during the start of when COVID was really picking up. 

    Currently, My son is doing pretty well. We did have a minor hospital stay the week before Christmas due to not being therapeutic on his Warfarin levels for his mechanical valve. Warfarin seems to be the biggest challenge for us.  He also is fed completely by G-Tube as he refuses to eat by mouth. 

    I joined this community hoping to make new friends and to be able to ask questions/talk openly about the struggles/worries with people who understand the journey! 

    Stephanie Greene
    Mount Holly NC