The number of enteral-fed infants and children with a nasogastric tube, gastrostomy or jejunostomy has significant increased in the last 20 years (Devaluy et al., 2005). While artificial feeding is useful and appropriate in a medically unstable situation or where there is a specific chronic condition like dysphagia, specific metabolic diseases or coma vergil, it is not the method of choice if oral feeding is possible. The consensus is that the transition from tube to oral feeding should be established as soon as tube feeding is no longer appropriate. But in some cases children refuse to eat even when the tube is removed. At this point, a tube weaning therapy is required. The intervention program is similar to the program for children with feeding disorders, but specifically designed for tube-fed children.
In the following, we describe a home-based program. This intervention program is completely embedded in the familiar environment of the child. Some inpatient programs have the same therapeutic background (University Hospital of Graz (Austria), Urban Hospital Darmstadt “Princess Margaret” (Germany)). In both of these, the primary therapy goal is to re-establish a full oral, self-regulated intake without medical constrictions.
Diagnosis and preparation (1-4 months): Indication and contraindication for involvement in the program must be carefully addressed. This includes a review of all relevant medical reports, a swallowing evaluation and conferences with the infant’s therapists. After completion of the evaluation, inclusion and exclusion criteria are discussed.
Exclusion criteria are:
- There exists evidence for or a high risk of aspiration of fluids or nutrition.
- Child is still in the medical treatment process or under recovery.
- The impact of tube weaning would worsen the medical situation.
- The medical diagnosis prevent oral feeding prevent self-regulated oral intake.
- Self-perception is disturbed in the child or in the parents or in both.
Inclusion criteria are as follows:
- Two days of minimal to zero calories could be tolerated.
- The process of recovery has advanced to a status of medical stability
If inclusion criteria are fulfilled, a tube weaning therapy is considered possible.
Aftercare (6 months): In general, after intensive treatment a sufficient oral intake is observed. Nonetheless short periods of food refusal may occur. An aftercare period of 6 months is established to counsel parents. This is managed by email, phone and personal contact; frequency of contact is regulated by the parents. After feeding behavior becomes stabilized, PGT is removed.
Reduction of tube intake (7 days): The amount of fluids and nutrition is reduced over five days. Each day the amount is reduced by a further 5-10% until an amount of 50% of the original quantity of nutrition and fluids is reached. During the two days that follow, this amount is maintained. The reduction follows a schedule written by the therapist, which is sent to and explained to the parents. Parents are able to contact the feeding therapists each day during this phase of intervention.
Intensive treatment (4-10 days): After tube intake has been reduced and current medical restrictions have been ruled out, tube feeding is terminated for the phase of intensive treatment. Nasogastric tubes are removed; PGTs are not longer used. During the treatment a pediatrician and a feeding therapist are involved as the basic team.
Pediatric monitoring: The pediatrician is responsible for the daily monitoring of weight and general condition of the infant, especially focussing on symptoms of dehydration. In cases of prolonged food or fluid refusal (2-3 days), two controls per day are made. Blood gas analysis or specific weight is calculated if a child loses more than 5% of its weight. The pediatrician must be on a 24-hour stand-by.
Medical abort criteria are defined as weight loss of more than 10%, severe dehydration, severe infections or cardiorespiratory instability.
Psychological treatment: The feeding therapist visits the client family on a daily basis for 4 to 10 days. 4 to 10 hours of treatment per day are necessary to ensure a successful therapy process. A 24-hour stand-by is guaranteed; the therapist therefore stays in proximity to the family, e.g. incase of a crisis in the night. The child is guided through the development of self-regulation of hunger, thirst and repletion. The parents are guided through their needs of control and self-regulation in three main intervention areas.
Child-therapist interaction: Fear, anger and desperation are normal feelings after life-threatening and extremely traumatic situations. Therefore play situations are established to work through the wide range of negative feelings that can be produced. Furthermore, the development of autonomy should be encouraged. The play process is led by the child. The therapist follows the child’s initiative and verbalizes what the child tries to express.
Treatment in the feeding situation: Children and parents are accompanied during the feeding situation 2 to 4 times daily. Signals given by the child and the parents are translated for themselves and their partners in the feeding situation. This intervention is useful regardless of the age and developmental status of the child. The awareness of a “translator” reduces the tension in the feeding situation. A less stressful atmosphere facilitates the child’s interest in eating. Symbolic play with regard to feeding and eating, such as feeding dolls, parents or the therapist, doll tube feeding and baby picnics are encouraged.
Parent-therapist interaction: In the majority of cases, prolonged tube feeding is caused by the infant experiencing a critical medical situation. The onset of Posttraumatic Stress Disorder associated with this has a high prevalence in parents of tube-fed infants. Therefore, an evaluated psychotherapeutic treatment for traumatized parents is used to address this problem.
Psychological abort criteria are the occurrence of psychological decomposition in a parent or the child and the child not developing feeding competency or re-establishing self-regulation.