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Feeding Tubes on Fontan kids

  • 1.  Feeding Tubes on Fontan kids

    Posted 04-13-2018 07:18
    ​Has anyone been faced with possibly doing feeding tube after Fontan operation? My daughter is 3 1/2, she is 4 weeks post Fontan. She struggles to gain weight, she small (but so are the rest of us, my husband and I are both tall and thin and our heart healthy oldest is 6 1/2 weighing 38 pounds). My daughter is also very active. Leading up to the Fontan we were doing nutrition therapy - higher calorie foods, adding extra calories where we could, pediasure  shakes etc. but she just continued to maintain her current weight. In December cardiology directed us to a GI Dr who had us try a few new things and tested her for a few things to make sure something else wasn't going on. Still my daughter maintained her current weight. 2 weeks prior to Fontan, the GI Dr suddenly blurts out that we need to consider feeding tube. The Fontan surgery went on as planned, but not without the extra added stress of thinking about feeding tubes and fighting to get my daughter to eat. My husband is all for it and I'm not. I have many issues ranging from concern that she'll just stop being interested in eating by mouth all together, since coming home she's quickly returned to her "normal" behavior and she's still very active (you would never know she had surgery 4 weeks ago!), and I feel like it's just her age that she's so picky with food. At this point I don't want to subject her to another hospital stay, another surgery as she's been having night terrors since coming home.  I feel like there has to be another option to feeding tube or a better time frame than a month to determine if she'll start to catch up on her own. I would love to hear if anyone else has had this experience, if you ended up with the feeding tube or found an alternate solution. Thank you.


  • 2.  RE: Feeding Tubes on Fontan kids

    Posted 04-13-2018 14:32
    I'm definitely not an expert but being a mother, I too, would have concerns over a feeding  tube for my child.  
    If you can why not wait for a while to see if things change?
    I do know my nephews are very picky and they've been small all there life.  12 and 8 yrs they are doing god.

  • 3.  RE: Feeding Tubes on Fontan kids

    Posted 04-14-2018 08:16
    I haven't personally had to deal with this after the Fontan but I did with the Glenn. However, it was an NG tube and once Kyle pulled it out o wasn't letting them put it back. As a heart healthy kid I was a very picky ester and extremely thin. Every child is different. Unless they think she is in imminent danger and it is effecting her heart I would refuse. I'd let her just be what her "normal" is. But that is me. I hope you figure it out and are at peace with whatever decision you make. Good luck.
    Danielle Graham

    Danielle Pechette-Graham
    Monroe NY
    (845) 514-4688