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The month of March is dedicated to a very special group of children who are often referred to us for tube weaning – those with esophageal atresia.
Esophageal atresia is a congenital malformation of the esophagus that causes the esophagus to terminate in a blind-ended pouch rather than connecting normally to the stomach. The gap caused by this disconnection can be of varying lengths. Approximately one out of 3000-4000 newborns is affected by this malformation, so it is rather prevalent!
There are various types of esophageal atresia., In most cases, it is accompanied by a tracheoesophageal fistula (TEF), which can occur on the upper or lower segment of the esophagus. Frequently, the suspicion of this malformation develops early in pregnancy,when an ultrasound shows an increase of amniotic fluid due to the baby’s inability to swallow it.
A child born with esophageal atresia will show significant signs immediately after birth: Discomfort, cough, salivation, cyanotic complexion despite the ability to breathe.
Due to the disconnection of the esophagus, it is not possible to feed these children orally. Consequently, a G tube (put directly into the stomach) or a jejunal tube (put directly into the jejunum) is placed shortly after birth to provide adequate nutrition in addition to intravenous feeding. The child’s saliva may need to be suctioned away to prevent aspiration, which means that children experience unpleasant sensations in the oral region quite early.
Usually, the first corrective surgery takes place within the first days of life, the goal of which is to connect the two ends of the esophagus (end-to-end anastomosis). However,if the separation is too long, the esophagus needs to be stretched or replaced, e.g. by gastric pull-up or colonic or jejunum transposition.
Due to development of scar tissue frequent dilatations may be necessary.
The operative repair of an oesophageal atresia and distal tracheooesophageal fistula
Source=Lewis Spitz. Oesophageal atresia. Orphanet Journal of Rare Diseases. 2, 24. 2007
After successful surgery and months of aftercare, most children are able to eat orally from a technical point of view. Unfortunately, many of them have developed tube dependency as a result of the various interventions. This means that children refuse oral feeding, retch, gag and vomit regularly. In many cases, even touching food is associated with fear and disgust!
Thus, children with esophageal atresia are particularly likely to refuse any oral stimulation due to the various negative experiences they have had during the intensive care and surgical procedures. This can be further complicated by the fact that oral feeding was not possible at the beginning of their lives, contributing to a sense that all oral stimulation is dangerous and negative.
Older children who are still tube fed may even point to their tube when they are hungry and recognize it as their “mouth”.
In such cases, specialized tube weaning strategies are crucial. From our point of view, an approach based on the initiative of the child is essential. The child should be empowered to discover the world of tastes and food in a supervised environment, without any pressure or force. Ideally, this weaning will take place in a non-clinical environment to prevent re-traumatization.
(Learn more about Srnas Story here)
In children with esophageal atresia who primarily succeeded in the transition to oral feeding, eating disorders may occur later, e.g. eating only when distracted, problems in the transition to purees or solid food… In such cases, treatment by a specialized team is indispensable. In particular, professional support of parents as they gain confidence in their child’s ability to learn to eat from a technical point of view, to bite and to chew, and as they learn to give their child time to catch up in their eating development is of great importance.
We at NoTube have successfully treated over 50 children with esophageal atresia in our Netcoaching program, our Eating Schools and our Learn to eat program during the last several years. We look forward to helping many other children with this malformation in their transition to joyful oral feeding.
http://www.we-are-eat.org/ – The Federation of esophageal atresia and tracheo-esophageal fistula support groups e.v