Having a brother or sister with a feeding tube or other medical challenges can be very difficult on siblings. Sometimes they must make big sacrifices to keep their sibling safe and healthy. Most siblings, however, are proud of their brother or sister, and want to do everything to help him or her.

In this section, we have a few words of advice to make sure siblings feel loved and supported, and to help them thrive. We also include two interviews of siblings to get a greater understanding of their needs and desires.

Make sure siblings get enough attention

Sometimes taking care of a child with a feeding tube really requires a lot of time and effort. Unfortunately, siblings sometimes feel like they are not getting enough attention, which may lead them to act out with negative behaviors. Remember that the quantity of time is not as important as the quality of time. Make sure to make one-on-one time for siblings, to make sure they are feeling loved and valued. A simple hour-long trip to get a snack and chat may be all that is needed to make a sibling feel loved.

It’s also important to ask about and listen to their feelings without judgment. Some siblings may feel jealous of a sibling, or angry that the family can no longer participate in certain events. These are understandable and legitimate feelings that should be validated.

Find ways to include siblings

One of the best ways to make siblings is to include them in the care of their brother or sister. Older siblings may be able to assist with simple medical tasks, while younger ones may be able to help gather or wash syringes. Let them help out, with proper supervision, as much as is appropriate for their developmental level and the safety of their sibling.

Another great way to help siblings to feel included is to help them make a presentation about tube feeding for their school, church, or another group. We have information on school presentations available on our Feeding at School page. Or, let them host a lemonade stand or other fundraiser to raise money for Feeding Tube Awareness.

Get siblings support

Sometimes the only kids who really “get it” are kids in the same situation. The Sibling Support Project is a nationwide organization specifically designed for the siblings of children with special needs. They host SibShops throughout the country, and also publish books and other helpful materials for siblings. Your local hospital or disability resource center may also offer sibling support services.

The Inside Scoop from Real Siblings

Q: How long has your sibling had a feeding tube?
A: Since she was a baby.

Q: Do you know why?
A: She can’t eat things through her mouth because she puked all the time when she was a baby.[Raya had chronic vomiting of unknown etiology that has now resolved. She is currently diagnosed with dysphagia, GERD, gastroparesis, mild developmental delays, multiple food allergies and intolerances, and 18p11.31 duplication.]

Q: What do you know about how the feeding tube works/helps?
A: It feeds her formula that gives her the energy food gives. If she didn’t have a feeding tube she would have to always eat through her mouth and she wouldn’t really feel good like that.

Q: How do you help with the feeding tube, pumps, feeding?
A: I can check to see why the pump is beeping, like if it’s empty or if it needs to be primed [when there’s a blockage that causes a no flow out alarm]. I kind of know how to put it back in if her tube comes out.

Q: What kinds of things do you like to do with your sibling?
A: Play games, go outside with her, play with toys, read her books, and help her reach the sink and do things that are hard for her.

Q: Do you think the feeding tube gets in the way of the activity or makes it hard for her to do things?
A: I can’t really think of anything.

Q: What’s it like when you’re out with your sibling and people see her tube feeding?
A: I don’t really notice people looking.

Q: Do your mom and dad ever worry about the tube (seem worried or struggle with the tube)?
A: Yes, I think it’s hard for them to have a kid with a feeding tube.

Q: Do you remember how you felt when your sibling first got her feeding tube?
A: Annoyed because I thought now we would always have to see her looking different. The tube bothered me because she was always crying when you stuck it up her nose. I didn’t like seeing [mom] put the tube back in her nose because she cried a lot. And sometimes it gets really old when you hear that every day. She looked more different with the one in her nose than the one in her stomach. The one in her nose was the most unusual.

Q: How do you feel about it now?
A: Now the tube doesn’t bother me as much. It’s annoying when the extension tube comes out and we have to put it back in. The pump is annoying too.

Q: What’s one thing you don’t like about the tube?
A: It’s always in the way of things when she’s not wearing her backpack and her tube isn’t tied up [she doesn’t always wear her backpack when we’re at home so the tubing gets in the way]. I don’t like when it pops out because we have to take up time and put it back in. And it makes a mess and it smells.

Q: What’s one thing you like about your sibling’s feeding tube?
A: Her new one glows in the dark and that’s pretty cool.

Q: How long has your sibling had a feeding tube?
A: I want to say a little less than 4 years. [Close, it had been 4 years and 4 months.]

Q: What can you tell me about why she has a feeding tube?
A: Because when she was little she wouldn’t eat like she was supposed to so the doctors gave her the feeding tube through her nose and then that kept coming out. Then they gave her a different tube and a couple other tubes after that. Now she has a glow-in-the-dark one. She threw up all her food after she ate. [Raya had chronic vomiting of unknown etiology that has now resolved. She is currently diagnosed with dysphagia, GERD, gastroparesis, mild developmental delays, multiple food allergies and intolerances, and 18p11.31 duplication.]

Q: Why does she still have a feeding tube?
A: There’s a lot of things she can’t have and there’s only certain things that she can eat. She won’t exactly eat all the stuff she’s allowed to eat and she doesn’t eat enough.

Q: What can you tell me about how the feeding tube works/helps?
A: The feeding tube gives her food and helps her not be hungry. Without it she’d have to drink the formula and probably wouldn’t really accept that.

Q: How do you help with the feeding tube, pumps, feeding?
A: Sometimes in the morning, I help get the pump ready by getting the bag and turning on the pump. When her balloon comes out, I find the emergency kit and put it back in. If her pump beeps, I fix the problem and get it going again.

Q: How did you learn to do everything you know how to do with her tube and pump?
A: [Mom] taught me and I learned by watching and asking questions.

Q: How does knowing how to do all those things make you feel?
A: I feel unafraid and relaxed because if her tube comes out I know what to do. If I didn’t know how to take care of her, I would be worried and scared.

Q: What kinds of things do you like to do with your sibling?
A: Dance, talk about things, let her sleep in my bed, play games, let her play with my jump rope, teach her things.

Q: Do you think the feeding tube gets in the way of the activity or makes it hard for her to do things?
A: No. I mean, swimming, if she’s plugged in. We have to unplug her and then plug her back in when she’s done, but I don’t really think it gets in the way of anything.

Q: What’s it like when you’re out with your sibling and people see her tube feeding?
A: Sometimes at school I’m talking about her and they don’t know who I’m talking about so I give them a brief summary about why she got her tube. My friends sometimes wonder what the tube is and why she has it, but mostly they just think she’s cute.

Q: How does that make you feel when people are curious about her tube?
A: If I can tell they’re curious, I go up to them and tell them about it. I can usually tell if they’re staring at her. If they’re staring with a disgusting face, I feel like doing something about it and telling them not to stare at her because she’s just a normal kid. If they’re just looking at her in a normal way then I’ll be nice about it and just answer their questions, if they have any. And if I can answer it.

Q: Do you remember how you felt when your sibling first got her feeding tube?
A: I was sort of curious and eager to learn about it and sort of impressed by her feeding tube. She looked a little different, but she was still really cute.

Q: Do your mom and dad ever worry about the tube (seem worried or struggle with the tube)? Do you think it is hard for your parents to have a kid with a feeding tube?
A: Sometimes

Q: What’s one thing you don’t like you don’t like about the tube?
A: Sometimes if the pump beeps a zillion times and we can’t figure out why, it gets on my nerves a little.

Q: What’s one thing you like about your sibling’s feeding tube?
A: I like that she’s happy about it. I also like that it keeps her healthy. I also really liked giving a presentation at school about feeding tubes.