From breast to G-button. But mouth, nose and hands are still there

Article by Ena Heimdahl, MA, April 28, 2019

The aim 

The aim of this article is to give voice to a small group of children at the lower level of functioning and with many health problems. They are children with profound multiple learning disabilities (PMLD). They will be technology dependent and have lifelong needs. They are very fragile and very often they will not reach the symbolic level in communication. Their language is basically a body language that demands a high degree of sensitivity and responsivity from the people around the children. 

Most of all they are children with a big desire to communicate. We will call them Une from now on.

Many of these children struggle with Dysphagia. Many get nutrition through a PEG (percutaneous endoscopic gastrostomy) and after some accommodations the PEG is replaced with a low- profile gastrostomy-button (G-button). Many parents and professionals will name it simply “button”. 

The story of Une is a story many parents and caregivers can recognize. Below, Une’s mother and Une’s relief personnel tell of her story...

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