Some tubie parents are fortunate to have understanding family and friends. The love and support that comes with this arrangement is beyond value. For most of us, that doesn’t seem to be the case. The vast majority of parents with tubies are repeatedly told how much better of a job others could do if they were in our position. There are many things said so awful I don’t feel comfortable sharing them. No one deserves to be treated like this, much less parents of a child with a serious medical condition.
No one wants their child to have a feeding tube. Every parent tries and tries to feed their child. The feeding tube comes when the child refuses every attempt and the parent runs out of time due to the child’s health. There’s only so low of a weight a child can be in proportion to their height before their health is endangered, and it’s not nearly as low as it is for an adult. In some cases, the child cannot eat safely and continuing to feed them certain things (or in the worst case, anything) would cause lung damage, pneumonia, and eventually an early death.
Here is some information you can share with family and friends from http://www.feedingtubeawareness.com. I hope it helps. Do not be afraid to reduce or eliminate contact with unsupportive people in your life if they will not see reason.