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When Choosing a Feeding Tube Felt Like Failing My Son

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I will never forget our first appointment with our son’s gastroenterologist. Our son was 9 months old and barely over 9 pounds. We went there with the intention of discussing placing a feeding tube for our son. Our efforts to help him gain weight were futile. We tried adding calories. We tried more meals. We were exhausting our options. Feeding time was extremely stressful.

In the beginning he nursed and he took bottles, but he fatigued quickly. We resorted to feeding him with syringes when he would no longer drink out of the bottle. As he screamed and tears fell down his face as well as mine, I kept trying to feed him. At the time we had no idea our son had a rare genetic condition, PMM2 CDG, where weight gain can be extremely difficult. Not only was weight gain very difficult, he was developing a severe oral aversion which he still has today. Failure to thrive has been an old friend of mine for nearly three years now.

“Do you want to be admitted to the hospital today?” his gastroenterologist asked, minutes after we met her.

Wait, I thought. What? Today? This was supposed to just be a discussion. As his mom, placing the tube felt like I was giving up. I’m supposed to be able to feed my child. I am supposed to be the one to help him thrive. I didn’t want to fail him. At that moment, that was exactly how I felt. As his mother, I was failing.

We were admitted to the hospital two days later and went home with brand new hardware, a Mic-Key button. Looking back, the only regret I have is not placing the button sooner. I now realize I wasn’t giving up. I was listening to what he needed. In order for him to thrive, a feeding tube is what his body needs. In order for him to gain strength and weight, this is what his body requires. I can provide him with all the nutrition he requires with less stress, no tears, and fewer worries. I have the ability to hydrate him when he’s ill. I can give him all of his medication without anything being spit down his shirt or on my face. I can hold him during a feed and look into his smiling face.

I know there may be other parents on the fence. You may be telling yourself that you’re giving up. You may be feeling like a failure, but let me tell you that you are absolutely not failing. You are in no way giving up and taking the “easy way out.” You tried. I know you did. You are continuing your journey with a new piece of hardware. You are pushing on and pushing forward. You are making a decision, and for us, I am confident that our decision was the right one.

As parents, we want to be able to provide all that we can for our children. Feeding our children is one of the most natural and instinctual behaviors. I’m just doing it with a little button, and a whole lot of love.

Melissa's son, a little by with blonde hair.
Melissa’s son

Follow this journey on Team Christopher S.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: April 18, 2016
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