By Traci Nagy on behalf of the Feeding Tube Awareness Foundation
The Feeding Tube Awareness Foundation is run by parents of tube-fed children. Its mission is to provide parents and caregiver with pragmatic information, resources, and support. The organization also raises positive awareness of the benefits of tube feeding through Feeding Tube Awareness Week.
In addition to our vast personal tube feeding experience, we hear from thousands of parents who share their information and knowledge on our Facebook page support group. We hear recurring themes in talking with parents that we wanted to share with clinicians. Below is some food for thought for when you are working with parents and caregivers who are new to the tube feeding journey.
- We are entrusting you with our child’s health. Think of your own children, nieces, nephews, or friends’ children. A little bit of caring will go a long way in treating not only the child, but in reassuring scared, often sleep-deprived parents. Moreover, listen to what parents are telling you about what their child is experiencing.
- Be careful about giving estimates about how long a child is going to be tube fed if the underlying medical conditions aren’t fully known. It sets up expectations for parents and they can feel blindsided if things do not work out as you said they would. Moreover, it is better to prepare patients for the journey ahead, which is likely to include testing and may include oral feeding challenges.
- Give parents a feeding schedule that is sustainable at home. Many parents are given a starting feed schedule of bolus feeding every 3 hours around the clock. This may work in the short term, but we all need to sleep for longer than 2 hours at a time. Moreover, parents need to learn how to adjust their daytime schedules (which may involve other children) to feed every 3 hours. It takes time for parents to build up the confidence to feed anywhere or ask your permission to do a continuous overnight feed so they can sleep.
- Make sure parents learn to vent a G-tube. We hear from far too many parents that they were never taught to vent the G-tube. Regular venting can make a child much more comfortable and lessens retching and vomit. An easy rule of thumb for parents new to tube feeding is to time venting to diaper changes, or for older children every 2-3 hours during the day. And make sure that parents continue to vent the G after they have moved to a GJ!
- Don’t just label it reflux and move on. While reflux is an issue, it isn’t typically the only one in a child who requires a feeding tube. Vomit is a vague symptom of many conditions. Investigate what is causing a child to stop eating or have difficulty eating enough. Check for motility issues, food allergies, eosinophilic disorders, structural issues, etc. The wait-and-see approach may be sustainable and appropriate for a couple of months, but not longer.
- Involve other specialists and think outside the box. It is a whole new world of rare conditions out there with the mapping of the genome and more cost-efficient genetic testing. Just because a child doesn’t fit a profile of the known disorders or diseases that you have seen before doesn’t mean there isn’t a diagnosis out there for them.
- Don’t de-emphasize oral eating if it is safe for the child to do so. Recommend parents to feeding therapy, stress keeping oral skills alive (even for those who are nil per os), and make room in the feeding schedule for oral eating. Prepare parents by letting them know that their children aren’t likely to eat the same amount when they are being tube fed because they are taking in more calories than they were before the feeding tube (this is especially true of many children who were previously diagnosed with failure to thrive).
- Have a plan for weaning, but don’t implement it until a child is really medically safe to eat or drink all their nutrition and hydration. It is great when we hear of medical professionals who help guide their patients to greater oral eating and drinking. There are many children who safely wean at home or with the use of programs who go on to remain oral eaters after that. But we hear of too many cases in which children are being pushed to wean or have been weaned only to learn that there is an unresolved medical condition that is preventing them from eating.
A great clinician can make all the difference to a child and family. We are forever grateful to those who care for our children like they would their own. Thank you for what you do.
Traci Nagy is the Founder of Feeding Tube Awareness Foundation, a 501(c)(3) non-profit organization, founded in 2010. The organization’s facebook page is the largest online support group for tube feeding in the world. Traci is the 2013 recipient of the Lyn Howard Nutrition Support Consumer Advocacy Award from the American Society of Parenteral and Enteral Nutrition.
The views expressed in this post are those of the author, and do not necessarily reflect the views of A.S.P.E.N.