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At NoTube we look after many children who were born prematurely. We treated over one hundred prematurely born children between 2009 and 2013, and helped them to lose the feeding tube.The reason why they needed a feeding tube is clear. They were too small, immature and sometimes too sick to eat. They were born far too early, often weighing 400 – 2000 grams, needed to be placed on a respirator, were intensively monitored and received no or the smallest amounts of milk through a feeding tube. Their intestines were immature, breastfeeding was nearly unthinkable (neither the mother had already milk nor could the baby drink). At the time you had to be happy that the child survived.
Months and years later many of the earlier problems have often been solved. The children can breathe; some can walk and become more independent. Sometimes there are residual problems resulting from their all too early birth. These could be a retina disorder; it could be a lung weakness in the sense of a bronchopulmonary dysplasia; it could be a movement disorder following a brain disease; it could also be digestive problems, which, for example, develop after a necrotizing enterocolitis. Not all children have problems, but those born very early suffer from them more often.

IMG_0047 (1)Movement disorders after prematurity affect the extremities, which mean the arms and legs. Such disabilities are referred to with the words CP (= cerebral palsy), spastic paralysis, or movement and walking disorder. When the infant’s brain suffers severe damage the effect can be even more serious. Practically all functions can be affected, from movement to breathing and digestion. We won’t list all the symptoms here. Each child is different and has different problems after an extremely premature birth.

We predominantly meet those children at Notube who haven’t learnt to eat. At the time, where the psycho-physio-development nature determined that the children should learn to eat they were maybe too weak or too sick to learn to eat. In addition, the “right” time to move to feeding orally might have been missed, or urgent surgical interventions made learning to eat impossible. On top of that inbound reactions occur: everything that is not necessary is not done. The mouth is not used and even the slightest approach of food may lead to retching. Furthermore, many of these children premies are orally hypersensitive and are overly sensitive to all stimulation.

Some have a feeding tube placed “only” because their growth rate is unsatisfactory. But it may be that children who were too small already before the middle of the pregnancy (early IUGR – before the 24th week) often don’t catch up. Catch-up-growth doesn’t happen in these children. Others may suffer from reflux (GER) having heartburn. All that may lead to being tube-fed and subsequently not learning to eat.Notube tube free premies

When eating doesn’t start all concerned (especially the medical staff) are happy that tube-feeding is possible. If the tube remains longer than needed the child might miss the moment when it could learn to eat by itself.

In counselling preemies we want to know whether they have ever eaten anything by mouth.

Besides that we want to see the child as a whole. On video we assess if the child has the potential to learn to eat; how the child reacts to food; whether it avoids it; whether the child is fed, when it has no hunger; if the child is sat or laid appropriate for age for feeding; whether feeding follows the child’s needs or the wishes of the parent; and lastly if there are any comments in the doctor’s letters that state that eating could be dangerous for the child. All this information will be evaluated in the assessment, and a children accepted, is one who we believe will learn to eat and enjoy it. The assessment is an essential component for our tube-weaning program.

We help the parents of affected children, and if you too think that your child can learn to eat, then we warmly invite you to take part in our pre-diagnostic assessment.

Peter Scheer