Mended Little Hearts Open Forum

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  • 1.  Introduction

    Posted 06-03-2018 07:35
    Hi everyone. I just recently joined. My is still in utero. He was diagnosed with pulmonary artesia with intact ventricular septum At 20 weeks. I was terrified. I am still having a hard time dealing with this pregnancy because im so scared of the surgeries. But God is going to bring us through. I'm finding hope that they even have surgery to correct this. At first doctors asked us if we would like to terminate. So I'm 26 weeks now. Please encourage me however you can and share some stories with me. My little guy and I are in for a journey but I won' leave his side. He' supposed to have either surgery or a catheter procedure shortly after birth. Then open heart at 6 months. Then the last procedure at 4 years old.

    Sarah Chenier

  • 2.  RE: Introduction

    Posted 06-04-2018 11:45
    Hello Sarah,
    It is so scary, but these babies are so special!! Our daughter is a happy, mostly healthy college student now, and she is a true joy. She has a great sense of humor and loves people. The first year of her life was the hardest, but then it got easier as time went by. Heart surgery is not fun, to say the least, but the rest of their lives are pretty good!! God bless you as you love this special gift from God.
    Pam in Texas

    Pam Reigle
    Fort Worth TX

  • 3.  RE: Introduction

    Posted 06-05-2018 08:34

              As a parent, I am sure you will never forget all the things your little one will go through.  As a 50 yr old TOF patient, I can tell you we don't remember it as scary.  I remember getting to drink as much HI-C as I wanted and watch tv in bed at night, things I normally would not have been allowed.  We forget the pain.  Now that surgery is done as young as possible, I am even more sure they won't remember.  Always keep your hopes up.

    Take Care,

    Robin Davis
    Madison OH
    (440) 428-2562
    (216) 905-1514