Many children with limitations involving motor function have difficulty eating, drinking or swallowing. Feeds may be accompanied by coughing and gagging, take a very long time, or lead caregivers to fear that they are causing the child to aspirate. For some children, this is an everyday occurrence; for others, it becomes a problem when just they have a cold or are feeling bad for other reasons.
With feeds that are carefully and patiently provided, many children with these challenges can put on sufficient weight and grow taller (longer). Others cannot. Being thin is healthy and probably natural for many children with diminished muscle bulk. For other children who are not gaining weight well, a question arises as to when this is unhealthy for them, or associated with unrelieved thirst or hunger.
Gastrostomies, and the tubes inserted in them (g-tubes), allow for liquid nutrition and hydration to be given directly into the stomach through a hole (the gastrostomy) created in the anterior (front of the) abdominal wall. The operation itself is very low risk. For children who need to take very bitter but critically important medicines in large quantities, a gastrostomy may be recommended to assure the best chance that the prescribed treatment is able to get in the child’s system.
There are many excellent resources available on line just by entering, “gastrostomy tube” in a search engine. When families are asked to consider agreeing to a gastrostomy for their children, it is important that they be clear about not just the benefits but some common misconceptions as well:
Myth #1: “If my child has a gastrostomy, it will not be possible for my child to eat.” On the contrary, knowing that nutrition and hydration can be supplemented through a g-tube allows a child and family to relax at feeding (meal) times and take in just what they feel comfortable ingesting, and no more. Feeds by mouth are unaffected by the presence of a gastrostomy.
Myth #2: “Gastrostomies often get infected, as they are in contact with the stomach, which contains bacteria.” After the first week or two following the operation, a time of increased risk for any surgical infection, the risk of infection around the gastrostomy is minimal. It is true that the stomach contents are not sterile, but they do not lead to more than occasional irritation of the skin around the gastrostomy. This can be minimized by the use of the proper-sized tube and an inner balloon, optimally inflated, to secure the tube in place.
Myth #3: “Once a gastrostomy is created, it can never be removed.” Many children learn to feed well enough over a matter of a few years. Over time, if a gastrostomy is no longer needed, the tube can be removed and the gastrostomy will seal up, or sometimes require a minor operation to close it.
Myth #4: “I’m worried about my child aspirating during feeds. So long as the feeds can be provided via gastrostomy, aspiration will be minimized and the lungs will be protected.” Most of what is aspirated in children with disorders affecting swallowing is saliva. In studies on adults with swallowing disorders, principally persons with advanced dementia, changing feeds to via gastrostomy has no protective effect on lung health. It is not at all clear that chest infections are reduced or respiratory health in general is improved by means of switching children’s feeds to the gastric route from oral.
Agreeing to a gastrostomy should never be an urgent undertaking. Be sure that you have plenty of time to understand the benefits that having a gastrostomy can provide, that you are clear of these and other misconceptions about benefits and risks, and have had an opportunity for all your concerns addressed.
Dr. Okun is Medical Director of New Alternatives for Children, a child welfare agency serving children with special health care needs and their families from New York City. He is board certified in Pediatrics, Developmental-Behavioral Pediatrics and Hospice and Palliative Medicine. He is a Fellow of the American Academy of Pediatrics and the American Academy of Hospice and Palliative Medicine and involved in committee work with those organizations. He is the recipient of numerous teaching awards. He has presented internationally and written about care for children with special health care needs, child maltreatment and a range of issues in general pediatrics, bioethics, and palliative and end of life care and bereavement
The views expressed in this column are solely those of Dr. Okun and are not intended to represent those of any agency or organization with which he is employed or otherwise affiliated.