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During the past decades, the use of enteral nutrition has increased in all areas of pediatrics. Tube feeding helps children in severe medical conditions to cover their nutritional needs and help them grow.
Some children with severe underlying medical conditions such as metabolic disorders which require a very strict diet or children with massive brain damage causing severe dysphagia leading to aspiration, may need enteral nutrition support (ENS) for their whole life. Nevertheless, the majority of all children who receive a feeding tube (either NG tube, G-tube/Button, J-tube or a JET-PEG) need ENS for a defined period of time (e.g. until their nutritional goals are met, or when waiting for upcoming surgery or during chemotherapy). Many children are able to get back to a normal oral diet afterwards, but some don’t succeed in the transition to oral nutrition. They have become tube dependent (1), which means that the child is no longer in need of a feeding tube for medical purposes, but did not learn or even refuses to eat. This situation can be combined with negative side effects such as recurrent retching, gagging, vomiting as well as oral or even tactile aversion. Due to this phenomenon, the child gets “stuck” on the feeding tube and needs specialized treatment to overcome this severe condition.
Prematurity: Many children who get tube dependent are born preterm (<36th week of gestation). In Austria, 8.3% of all newborns are born preterm (4), so one can imagine that the group of premature infants who get tube dependent is quite big! If children are born before the 32nd-34th week of gestation, their sucking reflex is immature, so tube feeding may be necessary to keep them alive. Most of these little patients receive a NG tube right after birth. If the medical situation becomes stable and the child has gained a sufficient amount of weight, tube weaning is the goal of many neonatal units, but this differs a lot between hospitals and countries. Some hospitals send preemies home regularly with the feeding tube. So the parents have to tube feed their child themselves at home. Some of them learn how to insert a NG tube. Unfortunately, many of these children are not able to get off the tube by themselves and receive enteral nutrition for many months or even years without medical necessity.
Failure to thrive: Another large group of preterm-born tube-fed children are those who are considered as “failure to thrive” during their first 2 years of life. These children succeeded in the transition to oral feeding after birth but don’t grow adequately afterwards. So in many cases, a feeding tube is reinserted after some months or even years of 100% oral nutrition. In many cases, these children stop eating completely when ENS is reintroduced and show many negative side effects of tube feeding, such as recurrent retching, gagging or vomiting.
Congenital heart defects: About 1.08% of all newborns suffer from congenital heart defects (5) such as ventricular or atrial septal defects or severe malformations (tetralogy of Fallot, hypoplastic left heart syndrome etc.). Most of these children require one or even more open-heart surgeries during their first months of life. As a good weight condition is crucial for these procedures, many children are supported by a feeding tube as they are often too weak to suck adequately. After all post-surgical issues have been solved and the child has recovered well, it can eat completely orally. Nevertheless, many children don’t succeed in this transition after weeks or months of ENS. As a result, in children after successful heart transplantation, tube dependency is also a big issue.
Metabolic disorders: Some children with metabolic disorders require ENS for their whole lifetime, but in other cases, weaning is possible. Of course this weaning procedures must be medically guided and should only be performed by an experienced team being in touch with the local treatment team regularly.
Malformations/diseases of the gastrointestinal tract: Some children who are born with specific malformations such as esophageal/duodenal or anal atresia, are not able to eat orally until the malformation has been corrected surgically. Malformations like lip or cleft palates also require surgeries; the children are often traumatized by invasive procedures in their oral region which may lead to severe oral aversion.
Many children suffer from gastroesophageal reflux disease (GERD) which can be very painful. Some kids even stop eating as a result of the pain and discomfort and can be fed enterally which may result in an oral aversion. A vicious circle commences.
Genetic syndroms: Feeding/eating disorders are described for patients suffering from various genetic syndromes, such as Costello syndrome, Silver-Russel syndrome, Franceschetti syndrome, Noonan-syndrome, Corneila deLage syndrome etc. Furthermore, syndrome-related malformations may also lead to the need of ENS (e.g. heart defect in Down syndrome, choanal atresia in CHARGE-syndrome and others.). Literature shows assumptions that these children are unable to learn to eat. Our experience shows that this is not true in many children. Fortunately, many of these little patients may get weaned off their feeding tubes.
Psychosomatic/psychiatric illnesses: Even in very young children, severe forms of eating disorders occur regularly. The condition of infantile anorexia, as described by I. Chatoor (3) may lead to severe malnutrition if not treated adequately and may even require tube feeding. Another group of children who often need ENS are those diagnosed with autism spectrum disorders. Weaning these children needs a quite specialized approach and a lot of professional knowledge about ASD. But it is necessary to say that these children may learn to eat.
Conditions with neurological impairment: Tube feeding is often necessary in children with diverse neurological diseases. An example is infantile cerebral palsy. 3-4 out of 1,000 newborns are diagnosed with CP (6). Some of these children cannot swallow properly or are not able to eat enough, whereas others improve with professional help and find a way to sustain themselves orally. In these cases a thorough assessment may be necessary. Swallow studies and video documentation may be helpful in order to rule aspiration out. Nevertheless its a big achievement and enhances life-quality for the child and its parents if the child learns to eat orally. For the parents it is often a huge relief when they are finally able to feed their child.
Malformation/disease of the respiratory tract: Children who suffer from conditions like laryngomalacia or tracheomalacia or diverse chronic lung diseases and may need oxygen support, eating might also be a big problem. The first goal is always to stabilize the breathing situation, but at the same time learning to eat is possible even in children with a tracheostomy!
Oncology/hematology: 13/150000 Kids aged <15 suffer from oncological diseases (7). Children who suffer from cancer sometimes might need ENS during the phase of chemotherapy. It might improve their nutritional state and prevent them from losing weight. Recurrent vomiting induced by the medication may lead to a severe oral aversion, making the transition back to full oral eating after the phase of intensive chemotherapeutic treatment nearly impossible. Medical as well as therapeutical help (e.g. by an experienced psychologist and/or speech-and-language therapist) is crucial. Eating orally enhances in these children the quality of life and adds to their well being and joy.
Renal problems: Children suffering from renal insufficiency or renal diseases often lack appetite. Tube feeding may be necessary for months or even years in order to stabilize the electrolyte situation and prevent protein loss. However, while the renal situation improves eating should be supported. When kidney transplantation (NTX) is necessary children should be supported to learn to eat fully orally again.
This list shows that there are many circumstances which lead to a feeding tube. Many children might be affected simultaneously by more than one of the cited medical conditions, which increases the risk (statistically) to become tube dependent. A feeding tube is a life-saving tool and provides best possible help for children who are not able to cover their nutritional needs. However, if the phase of medical need of the ENS is over, tube weaning should be the primary goal! Who would keep his/her leg in a cast if the bone has healed?
2. Marinschek S, Dunitz-Scheer M, Pahsini K, Geher B, Scheer P. Weaning children off enteral nutrition by netcoaching versus onsite treatment: A comparative study. Journal of paediatrics and child health. 2014.
3. Chatoor I. Infantile anorexia nervosa: a developmental disorder or separation and individuation. The Journal of the American Academy of Psychoanalysis. 1989;17(1):43-64.
5. Lindinger A. Schwedler G, Hense HW: Prevalence of congenital heart defects in newborns in Germany. Results of the first registration year of the PAN Study (July 2006 to June 2007). Klinische Pädiatrie 2010
7. Deutsch J, Schnekenburger FG. Pädiatrie und Kinderchirurgie für Pflegeberufe. Stuttgart: Thieme.