My sister was born July 20, 1993 with HLHS and passed away 15 days later due to heart failure. We didn’t really know much about HLHS, we didn’t think we would have to, until my daughter. April 2011 my husband and I were at my 20 week ultrasound when we found out we were having a little girl. My heart swelled with joy, “a boy and a girl, it’s perfect!” Not even two minutes later, all that joy I felt disappeared and was replaced with fear and tears. Something was wrong with our little girls heart. We got transfered to Childrens and underwent more scans to find out she did have HLHS, just like my sister.
My daughter, Sophia, was born August 19, 2011. She had her first open heart surgery at 3 days old and stayed in the hospital for 6 weeks. She had to have a g-tube (feeding tube directly through the belly)due to vocal cord paralysis. Her second surgery was when she was 3 months old and only stayed in the hospital for about 4 weeks. Sophia didn’t have her 3rd surgery until she was 4 years old, but in that time she had numerous doctor appointments and hospital visits, good days, bad days and some downright scary days. She doesn’t like going to the doctors and will burst into tears if she thinks she has to see one. Sophia has been through so much in her 4 1/2 years and is so strong, smart and loving. I like to imagine that if my sister was here, she’d be a lot like my daughter.
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