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hi there

our daughter isla was born at 32 weeks with a rare heartcondition. She spent her first 4 months in intensive care. She is now 14 months old and doing great. She has however been tube fed her whole life. First with an ng tube now with a mick key button.

I am keen to hear from anyone else in a simlar situation for information sharing

thanks

Hi there,

Your situation sounds similar to ours. I also have a baby girl with a rare heart condition who is still NG fed. She is 11 months old and we are on a waiting list for surgery for the mickey button.

Happy to chat to you - PM me if you like. Would also love to hear about the surgery for the mickey button as am a bit scared about her having more surgery.

What is your daughter's heart condition?