Mended Little Hearts Open Forum

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  • 1.  Failure to thrive

    Posted 07-06-2020 13:04

    Isabella has OHS in September of last year (at seven months). She was diagnosed as failure to thrive before her surgery. We had hoped that after the surgery her weight would increase to where it should be since she wouldn't have to work her heart so much to eat. 

    That didn't happen. She has been on high calorie formula and then high calorie pediasure since last May. 

    After her surgery she did have more energy and was better but her weight hasn't improved much at all. From July 2019 to July 2020 she has only gained 4 pounds. At 1 1/2 yrs she is only 17 lbs and can still wear some 3 month clothes.

    Has anyone else experienced this with your child? Anyone's child not have the expected weight gain after heart surgery? 

    She is scheduled for genetic testing soon but I understand it can takes up to six months to get results. 

    Thank you,

    Sheri Shumaker
    Elizabeth City NC

  • 2.  RE: Failure to thrive

    Posted 01-19-2021 15:47
    Hi! I know this is kind of an old post but I just joined and came across your post. My son is 22 months (will be 2 in March) and he is small. Currently, he barely weighs 20 lbs. He has had 2 OHS but that hasn't seemed to help him gain weight any quicker. He also has a G-Tube because he just doesn't care to eat by mouth. 

    I'm interested to see if you have had genetic testing done and received results yet? We went through genetics and found my son has a pretty large deletion in one of his chromosomes but other than telling me that, They have no idea what that means as they haven't seen his type of deletion before. They can just assume it has caused his heart defects and weight issues.

    Stephanie Greene
    Mount Holly NC