Vol. 20 • Issue 26
• Page 51
Some children with feeding disorders-for instance, those with short bowel syndrome-must have tube feedings for many hours at a time, often throughout the day when children are typically awake and moving around.
Whether the feeding is accomplished through a TPN (total parenteral nutrition) line directly into the bloodstream, or a g-tube into the stomach, it involves an external pump, a bag of nutrients, and a tube that carries the nutrients into the child's body.
That equipment makes it difficult for the child to move around. The usual solution to the problem is either to increase the length of the tube or to confine the child for the duration of the feeding.
But increasing the length of the tube increases the possibility of entanglement-even of pulling the tube out of place. And repeated confinement for hours at a time can actually slow a child's motor development, because children need to practice physical skills in order to master them and move ahead.
A Parent's Frustration
Entanglement and confinement can lead to great frustration for both parent and child. During a grand rounds presentation, I heard comments by the parent of a child on an extended feeding schedule. Among other things, she told me, "I was advised to confine my child for the duration of his feeding-22 hours each day. This significantly impacted all his areas of development, caused delays in his functioning and limited his ability to interact with his environment and other children."
This parent also said her son had been given a backpack whose interior was specially designed to hold his pump, nutrient bag and tubing in the proper positions-but that the backpack kept slipping off the child's small shoulders. It therefore needed to be placed on the ground beside him, leading to a different type of confinement and constraint.
For older children, whose shoulders are big enough to wear feeding backpacks, long-term use can cause other issues-for instance, repetitive stress injury to shoulders, and sometimes back pain.
We see these issues all too often in children with feeding disorders. And attempted solutions-including tube-lengthening, confinement, and standard feeding backpacks-can simply produce more problems.
It Works for Hikers
A new approach occurred to me as I was hiking, wearing a heavy backpack. Systems used on the trail are designed to contour to the wearer's back, and distribute the load around the center of gravity. I wondered whether we could adapt the standard feeding backpacks on the market to give children on extended feedings the same type of comfort and functionality that hikers enjoy.
At The Children's Institute of Pittsburgh-which has a comprehensive Functional Feeding Program-my colleagues and I soon realized that the positioning harnesses used for adaptive seating systems-for example, wheelchairs-could be a key to successful backpack adaptation. The positioning harnesses, which span the child's chest, come in a range of sizes, just as the feeding backpacks do. They are stretchable neoprene with either a four-buckle system or Velcro straps (depending on the preference of the parent) located at the shoulders and toward the sides of the trunk at the base of the ribs.
We decided to try the idea. We took a standard child's positioning harness, attached it to a comparably sized standard feeding backpack and saw immediately that the harness helped distribute the backpack's weight comfortably and evenly across the chest, and held the backpack snugly and centrally on the child's back.
Almost Part of Their Bodies
That mid-back position is, we found, ideal for a younger child. Their centers of gravity are higher than those of adults, and the mid-back location is more comfortable for them: the backpack almost seems to become part of their bodies.
It's important to note that, at first, the Children's Institute backpack feeding system does cause a change in a child's center of mass, and can therefore affect the child's balance-but most children quickly learn to compensate with new balance strategies. The younger they are, the faster the process goes; older children have more postural habits to unlearn and relearn with the backpacks. But we've seen that even children with gross motor challenges can learn to compensate, and become comfortable with the packs.
We tried the backpack system with a number of young children, and found to our delight that they were able to sit, crawl, side-lie, walk, pull-to-stand and do pretty much everything but lie on their backs while wearing the packs. Our little functional feeders had become far more functional.
With older children, the standard feeding backpacks are longer, so we adapt those a bit differently, using an additional waist strap with a hip pad system for better weight distribution. We do not want the pack's weight to be taken by the shoulders. Sometimes, with the older kids, we use the kind of positioning harness we use with the young kids-but we use the pack's regular shoulder straps, occasionally with a snap-buckle chest strap. We first do a functional mobility assessment to see what version of the system will work best for each child, keeping the pack secure and the weight where it belongs.
At The Children's Institute of Pittsburgh, we've found we can successfully adapt just about any backpack style. The packs specifically made for tube-feeding are often our first choice, because their interior design is made to hold the equipment properly. But if a child has his or her heart set on a particular mass-market backpack, we can adapt the interior to make it workable, and then do the exterior adaptation.
To date, we've worked with children ages 8 months to 8 years. They and their parents love the freedom allowed by the system-freedom to move around not only their homes but also their communities, looking just like any other kid with a backpack.
So far as we know, this system originated at The Children's Institute of Pittsburgh. We're sharing it because we believe that every child deserves to live with as few constraints as possible.
For more information about the system and how to make it work for your young patients, contact Chris Joseph and his colleagues at The Children's Institute, 1405 Shady Avenue, Pittsburgh, PA 15217; 412-420-2338, or firstname.lastname@example.org
Chris Joseph is director of physical therapy at The Children's Institute of Pittsburgh, an independent, nonprofit organization providing a broad range of individualized pediatric rehabilitative services to children from across the country and around the world.