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A diaphragmatic hernia is a congenital malformation requiring surgery right after birth. This procedure is basically a heroic act – the organs of the newborn will be put back to the correct position and the diaphragm will be closed. Apart from the life threatening risk right after birth, up to pulmonary hypertension which might be dangerous for a few more months, over the different breathing problems, the long-term difficulties of diaphragmatic hernia are often underestimated. Problems which are rarely taken into consideration are eating disorders, or even worse: tube dependency. How does this problem develop and how could it be avoided?
- Fighting for survival: The diaphragmatic hernia doesn’t do any harm as long as the baby is in its mothers womb, it doesn’t need his lungs at this stage. But as soon as it is born, its dysplastic lungs are put to the test, the baby often needs resuscitation, including a high-dosage sedation and artificial respiration to help the lungs develop. Priority at this stage is the survival of the baby, it can’t feed orally. The feeding tube is inevitable, might it be a nasogastric tube or a G tube, based on medical protocol.
- Disuse of the oral region: as a direct consequence of the rough start to life. A healthy baby is put into its mother’s arms and might find its way towards the breast or the first bottle. A baby born with diaphragmatic hernia doesn’t have the possibility to make such experiences due to the medical circumstances. It doesn’t use its oral region and might even lose the sucking reflex.
- Invasive procedures and traumatizing experiences: not only the oral region lacks stimulation, but also the repeated invasive treatments (intubation, aspiration) might have a traumatizing effect on the baby which links the oral region with aversive experiences.
- Medical instability: The complex medical history is often related to long-term difficulties such as chronic illnesses, especially in winter. There is also a risk for a recurrence of the hernia. These children often need many inpatient stays. It is common knowledge that an ill child, even if it is just a cold, lack of appetite and that one needs using some tricks to feed them. It’s the same in children with diaphragmatic hernia, not to mention the side effects of tube feeding, which might lead to recurrent vomiting during an illlness.
- Stress regarding weight gain and side effects: mainly due to the recurrent infections and the low birth weight, the children with diaphragmatic hernia often don’t follow standardized growth curves. The tube ensures to calm parents and medical team and to ensure – at least on paper – that the children are adequately nourished. The temptation is strong to increase tube feeds steadily to compensate the small weight gain. Only numbers count. This might lead to a vicious circle, children often suffer from adverse effects of tube feeding influencing the life of the whole family (vomiting, coughing, retching/gagging…). Under this circumstances it is hard for the child to create a positive relationship with its oral region.
- The psychological dependency of the parents:: the constant occupation with numbers makes the parents “switch off” their instincts, they learn to focus on amounts, the clock, rate of the pump, caloric content, weight… the parents have been severely tested by the illness of the child and it is hard for them to use their common sense. They have put their baby’s life into the hands of highly specialized teams, they have learned medical procedures (aspirating, preparing inhalations,changing the feeding tube…) and sometimes they forget about being parents instead of nurses. Letting the child babble, having fun with food … is not their priority. .
- Strong characters: Is it a myth that children with a complex medical history have a strong character? Looking at all those difficulties they have undergone since birth one could believe it. Perserverance and determination are certainly parts of their personality and one can imagine that it is not easy to feed them, the trick “one spoon for daddy, one for mummy” is not enough to convince them to open their mouth.
- Reduced social integration: the older a child gets, the harder it is to wean it from its feeding tube. On the one hand, the psychological dependency increases (identification with the tube), on the other hand the child is (due to its medical instability) often excluded from social events (kindergarten, school…) to prevent infections. So imitation of peers in the eating process is not possible: the child can not watch other children eat and therefore can not imitate them.
Camille plays with food and clearly shows that she doesn’t need to eat orally thanks to the feeding tube
So what to do if a child with diaphragmatic hernia has developed a tube dependency?
Prevention work is important, stimulation of the oral region is crucial while the individual difficulties and tube feeding must be taken into account. Each child must be seen as an individual, one should avoid working on unrealistic goals and tube weaning should be performed under the supervision of a highly specialized team as soon as the tube is not necessary from a medical point of view.