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Weakness in the throat or mouth can make swallowing without choking difficult or impossible for people living with spinal muscular atrophy (SMA). As such, children and young adults with SMA sometimes require a feeding tube to ensure they get the necessary nutrition. Even people diagnosed as adults may require a feeding tube at some point.
Knowing how to operate and maintain a feeding tube can help both people living with SMA and their caregivers to feel better about the whole process. When you know what to do, you’ll be empowered to make good choices for the overall quality of life and well-being of the person you’re caring for.
There are different kinds of feeding tubes. Gastrostomy tubes — also called G-tubes or percutaneous endoscopic gastrostomy (PEG) tubes — enter the stomach directly, for example. Jejunostomy tubes (J-tubes) are placed into the first part of the small intestine. Other types of tubes — called nasogastric (NG) tubes — carry nutrition through the nose to the stomach.
A health care professional will recommend what kind of tube to use and whether it should be temporary or permanent. Some people will get all of their nutrition through a tube, while others may use it in addition to regular eating. The type of tube a person gets partially depends on whether they’re a child or an adult with SMA. The type of feeding will also be different for every person — some nutrition will be given through a large syringe while others will require a pump over a few hours.
Different people feel differently about getting a feeding tube. Some people want them badly, like one mySMAteam member who said, “I’m waiting for a feeding tube. I lost 40 pounds during COVID. It’s really affected me.”
Others are nervous or worried, like someone who shared, “I’m afraid to get mine … afraid I’ll go downhill.”
Since there are a variety of types of feeding tubes, every tip does not apply for every tube. If you have questions, reach out to a doctor about the specific type of tube you’re dealing with.
Read on for tips to make home tube feeding as comfortable, efficient, and safe as possible.
Tube care starts with keeping the tube and the area around it clean. Wash your hands anytime you plan to work with the tube. Then, wash the area where the tube is placed with warm water and mild soap. You can bathe the person you’re caring for as normal, carefully washing the tube site in the process. Most tube sites need to be washed one to three times each day.
Different kinds of feeding tubes may require you to keep different supplies on hand. Your SMA doctor should let you know what you need and help ensure you can get supplies regularly and at a reasonable cost. If you have medical insurance, your insurance provider may cover the cost of your supplies.
The supplies you need may include:
You should keep a good stock of these at all times, including when you’re traveling.
You should also have instructions for flushing the tube. This should happen before and after you use the tube, whether for medications or feeding. Even if you don’t use it, you should flush it every 24 hours. The process for flushing tubes varies by type, so make sure you clarify with a doctor exactly what needs to be done.
If the person you’re caring for has bloating due to extra air or liquid in their stomach, you may be able to resolve that by venting the tube. You can usually tell if this is needed because their stomach will get swollen and may even feel hard after they receive a feeding. Each kind of feeding tube has its own device for venting, so make sure you get that from a health care provider.
Medications can be administered via the tube into the medication port. If you have multiple medications, only give one at a time, and make sure to flush the tube between medications. The medication should be liquid or very finely crushed powder in order to keep the tube clear. If it comes in tablets or capsules, talk to a doctor or pharmacist before you just crush or open them, as doing so may change the way the medication is digested. You can give medications for any medical condition via the tube.
Despite your best efforts, tubes can get pulled out for a variety of reasons. If this happens, call your doctor immediately. The tube needs to be put back in within four hours to prevent the tube hole from closing. Your medical team may tell you to push the tube 1 to 2 inches into the hole. Even if you do this, do not use the tube until it has been fully replaced by a medical professional. You will need to go to your doctor’s office or the emergency room as soon as possible. If the hole closes, another surgery will be needed to replace the tube.
Every time you clean the feeding tube site or interact with it at all, keep your eyes peeled for signs of an infection. Some discoloration or skin irritation may be normal, particularly if the tube has been recently placed. However, the following additional signs also may indicate an infection:
If you see any of these signs, contact a medical professional right away.
Tubes can get clogged with medication or feeding formula. If this happens, try using a syringe to push and pull water through the tube to clear it. If it doesn’t work the first time, keep trying every 10 to 15 minutes. Don’t push any other objects into the tube in your efforts to unclog it. Instead, if you can’t get the blockage to move, contact a medical provider as soon as possible.
Leaks at the mouth of the tube may indicate a positioning problem. Different tubes and their related parts will need to be positioned differently. You may need to add more water to some tubes or use a special protectant for the skin. Contact medical staff if you think something is wrong or if you can’t get the leak to stop.
There is no one way of feeding via a tube that works for all people and all tubes. Your doctor should make sure you understand the process to use as a caregiver and that you’re comfortable doing it. They may connect you with a dietitian to ensure the person you’re caring for is meeting their nutritional needs.
If you’re afraid of forgetting something, write the steps down and make a checklist. Every time you use the tube, go through the whole checklist to make sure you’re not forgetting anything.
Whether you’re helping a child or a young adult, the whole process will be easier if you try to make feeding fun. When feeding is fun and is associated with good things, the person will be more likely to want to engage in it. This will make it easier on all of you and help ensure they get the calories they need to thrive.
In addition to the situations mentioned above, there are other times when you should contact an expert to get medical advice. Make sure you reach out if the person you’re caring for has:
The more closely you work with doctors, the less likely it is that the person you’re caring for will experience significant complications with their feeding tube.
At mySMAteam, you’ll find the social network for people with spinal muscular atrophy and their loved ones. On mySMAteam, more than 2,000 members come together to ask questions, give advice, and share their stories with others who understand life with spinal muscular atrophy.
Are you caring for someone with SMA who has a feeding tube? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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Dennrik Abrahan, M.D.
received his medical degree from the University of Central Florida.
Learn more about him here.
Sarah Winfrey
is a writer at MyHealthTeam.
Learn more about her here.
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