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Many babies and children with Down syndrome (DS) face feeding difficulties or are even tube fed. But is there a reason why kids with DS shouldn’t be able to learn to eat and enjoy the world of food? Why do children with DS receive a feeding tube? 

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Below you will find  reasons for feeding difficulties or tube feeding in children with DS:

  • Congenital heart defects (CHD): about half of all babies with Down syndrome are born with heart defects such as ASD, VSD, Tetralogy of Fallot… Of course, the cardiological situation influences their general state; they are often too weak and tired to suck properly. As many open heart surgeries require a good general and, in particular, nutritional state and possibly  even a certain weight, tube feeding might be necessary at least until the child has recovered from surgery. Unfortunately, many
    children develop tube dependency and don’t succeed in the transition to oral nutrition.
  • Malformation of the gastrointestinal tract such as esophageal, duodenal or anal atresia or stenosis, these malformations require considerable  invasive treatment which might lead to oral aversion, even after surgical repairment and clearance to feed orally.
  • Muscular hypotonia: of course a low muscle tone may also influence feeding patterns – whether it be problems with suck-breath-swallow coordination or difficulties during the transition from bottle/breast feeding to solids – some children need highly specialized help to overcome these obstacles.

My baby/child with Down syndrome has a feeding tube and we want to get rid of it- what can we do?

First of all, it is important to find out whether your child is medically stable enough to eat orally (e.g. has fully recovered after heart surgery). If so, tube weaning should be the goal! 

We at NoTube offer two different tube weaning programs: the Netcoaching program (online treatment option) as well as the Eating School (2 week intensive onsite treatment in Graz followed by telemedical aftercare. 

My baby/child with Down syndrome doesn’t have a feeding tube, but we struggle a lot with feeding issues. Is there any help?

Yes, we also provide therapy options for other feeding problems of infancy and childhood- from problems in the transition to solid food to picky eating and difficult feeding (too little intake, long duration of feeding, no self feeding…). Our Eating School program is tailored to the child’s specific needs and our team of therapists, working in  areas such as sensory integration, physio, psychotherapy, psychology, occupational therapy, works not only with the child but with the family as a whole. Of course, the program is medically supervised by one of our pediatricians, so you can feel safe and confident in our child-friendly environment. 

We at NoTube have treated over 50 kids with Down syndrome during the last decade and were able to help them learn to eat successfully.  An extra chromosome is no reason not to enjoy the world of food!

Manuel H.

 

Sabine Marinschek