My son, Brayden, has had a feeding tube for the last two years due to failure to thrive and sensory issues related to autism spectrum disorder. My son can physically eat by mouth, but he refuses to do so. His sensory issues are severe, and he cannot even smell food without a reaction.
We’ve been in multiple different feeding therapies, and several therapists have dismissed him stating there was nothing they could do for him, that he would need intensive therapy. Our doctor discussed with us placing a feeding tube multiple times since his autism diagnosis and the weight loss and feeding issues began at 18 months old. The doctor would ultimately decided against placing the feeding tube since he would drink the formula by mouth. However, at 4 years old, he began refusing the formula, and he began losing weight again despite every effort by the physicians, therapist, and us as parents. After multiple tests to ensure there wasn’t anything medically affecting his eating and all tests coming back fine, we had no choice but to place the feeding tube. He wasn’t getting the proper nutrition without it. I couldn’t sit by and do nothing when a solution was presented, so with the help of the doctor, we decided it was the best option for us.
Much of the time when the feeding tube comes up in conversation, the response is almost always the same. I usually hear “I’m sorry” followed with a sympathetic look. My response to them is almost always the same as well.
Don’t be sorry. I’m not sorry. Of course, a feeding tube wasn’t in our plan. Of course, we’d love nothing more than for our child to sit down and have a meal with ease, however, he’s growing and thriving. I was watching my son lose weight and seem to waste away before my very eyes. I was seeing him tire easily when playing, and I could feel his bones when I hugged him. My son was pale and was constantly getting sick. We’d tried feeding therapy after feeding therapy with no progress at all. I felt like I was losing my little boy. No, a feeding tube is not what I wanted for him, but it’s what he needed. It’s what we needed. It gives him the nutrition he needs when he cannot otherwise obtain it. It gave him back his life. It gave him back energy, strength, and it of course helped him put weight back on. It’s been a blessing in our lives. The feeding tube gave us our son back, and for that, I’ll never be sorry. So please, don’t be sorry for us either.
Generally, the responses change once I explain what his feeding tube has done for our family. They see that even though it may not be an “ideal” method for feeding our little boy, it’s our method for feeding him, and fed is always best!
Image via Thinkstock.
We want to hear your story. Become a Mighty contributor here.