After using a G-tube for six years, it was up to me to decide when it would come out. At first it was hard to decide. But I knew when it really was time to do it.
Getting a G-tube for Major was the single most difficult parenting decision my husband and I have ever made. Deciding when to remove it, however, was a choice we knew we’d never have to make. Major would.
Major had an effective and easy plan for using his G-tube. He used it overnight only, 4-5 nights per week, for five years. He ate orally all day and increased his caloric intake as he got older, successfully gaining weight and staying over the all-important 50th percentile.
Sometimes when I would toss and turn while sleeping, my tubing would come unhooked. We used to say, “we fed the bed.” It was always a mess! Sometimes CF is hard — cleaning Pediasure off my bed at 2 a.m. was definitely one of those times.
Before getting his G-tube, I worried that it would get in Major’s way as an active, athletic kiddo. We got a G-tube so secure that it could only come out with a tool at the doctor’s office and sent him into the wild. Wouldn’t you know it, it never caused a single issue.
I play football, baseball, run track, swim, and lift weights. My G-tube never caused a physical issue doing any of that, but it made me self-conscious sometimes. I didn’t like the bump it made under my shirts and jerseys. When my shirt was off, I didn’t like when people asked about it. I was proud of my G-tube, but also didn’t want it. My friends were always so supportive. No one ever teased me about it, but when I met new people, sometimes they’d ask what it was. My buddies always helped me change the subject if I’d already told someone. I hated when people asked over and over.
After starting Trikafta®, Major’s weight gain sped up even more. We began to talk with his care team about how someday the G-tube would come out. No rush on our end! It was our favorite tool. When spring break of 2022 rolled around, we hit the road without the G-tube supplies – we actually never used his G-tube while traveling. With the benefits of Trikafta plus the lack of overnight feeds, Major’s morning hunger was through the roof, and he gained two pounds that week! We called his dietitian when we returned and told her about our discovery. She encouraged us to continue to hold off on overnight feeds and we’d see how things went.
I was happy to have one less thing to do, and no more Pediasure in the bed! I still wished I didn’t have the bump under my shirt. That’s when I started to think about taking it out. As much as I didn’t want it anymore, it was also part of my body. I was used to having it.
After several months of not using the G-tube and Major continuing to gain weight, we made a game plan with Major’s care team. We agreed we should go at least 12 months without Major using his G-tube before removing it. As hard as it was to decide to put it in, it was 10 times harder to remove it. And frankly, it was not our decision.
The moment we put that G-tube in back in 2017, we agreed that it would be up to Major and his care team to remove it. That’s part of letting him — the person who actually has CF — take ownership of his disease. We got well past the one-year mark and his team was very supportive that we get going on removing it when Major was ready. We ended up going 22 months of not using it before everyone was ready to go. We all felt so comfortable by then that Major could continue to gain weight on his own — plus he did just fine when he had a few colds and gastrointestinal bugs.
In August 2023, I told my gastroenterologist that I wanted to remove my G-tube at my December clinic visit. I wanted to walk into the appointment knowing it was coming out. No surprises for me! We arrived on Dec. 19 — almost two years since last using it — and I was really scared. I knew it would hurt because it had to be removed with a tool by my doctor. I’d had it for so long, and had it changed several times. At least this time, I wouldn’t have to put one back in. Turns out, it didn’t hurt as bad as I feared, and it was quick! I couldn’t believe the hole was already closed by the next morning. I went to school and even did my agility workouts for football the next day!
I definitely think that kids who are having a hard time gaining weight should think about a G-tube. Sure, you’ll have to have it changed sometimes, but that isn’t every day. I’m really glad I had it. I’m glad my parents let me decide when to take it out, but it was also hard for me. It was the first big health choice I made for myself. And I’m proud of that.
When Major was born in 2014 and immediately began to struggle with his weight, a G-tube was my greatest fear for him. It never felt like failure — I just didn’t want him to have surgery or need a device for his calories. Most parents at some point or another experience challenges feeding their child, even without CF.
I would encourage all CF parents to walk the path without fear, and to think of G-tubes as another incredible tool in the medicine cabinet. Do all the interventions recommended by your care team prior to considering this surgery. But, if and when a feeding tube is suggested, know that it is a good thing. It may very well be temporary in the body, but the impact it will have on your child’s future is permanent.
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