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Down Syndrome is caused by a chromosomal defect. It is not inherited but naturally occurring. The defect happens when the cells split. Cells contain one chromosome more, namely the chromosome 21. Parents can’t do anything about it. Statistics show that mothers who are over 35 years old have an increased risk of having a child with Down Syndrome. For this reason tests are offered during pregnancy to detect Down Syndrome. However mothers who take such tests need to know beforehand if they will end a pregnancy if the child suffers from Down Syndrome. Moreover these tests are not always safe and they are not conducted everywhere. Sometimes younger mothers have a child with Down Syndrome and are even more surprised.
This is why there are children who suffer from Down Syndrome. It is important to know that they are pleasant and loving children, and will be so as adults too. Unfortunately the change in the chromosome goes along with some defects. Many of the affected children have heart defects. In some of them the defect requires a heart operation. Other children have additional defects such as a missing anus or malformations elsewhere.
Children with Down Syndrome have a typical appearance: their hands are broader; a furrow runs across the hand (called a Simian Crease). Additionally they have low positioned ears, their eyes remind us of how the eyelids of Asian people look (Epicanthic), their tongue is often large, and they walk later and often talk less than other children. They are peaceful, friendly and enjoy the company of adults. One of many advantages of these children is that they know exactly what they want and how to get it. They are able to express their wishes clearly and seldom change their minds. New situations can scare them and then they try come back to a well known environment.
When these children eat poorly, or have problems with their oral skills due to their enlarged tongue, then a feeding tube might be placed. At first it is mostly a nasogastric tube, for example after a heart operation, or even before if they were too weak to drink. As the enlarged tongue and reduced oral skills often hinder sucking during breastfeeding a feeding tube might be placed. Children quickly get used to the tube. Children suffering from Down Syndrome tend to develop habits so they get used to the tube easy and quick. After a NG a PEG is often placed concurrently, especially if children are being sick or don’t tolerate the nasal tube well.
This isn’t a bad therapy in itself, but children get used to the tube quickly and stop eating totally. Eating is already difficult and some choke easily. This is why that when a child suffering from Down Syndrome has a feeding tube placed a date for the removal of the tube should be appointed. Often this doesn’t happen and the children become tube dependent.
We have already described tube dependency in an E-book. It affects children suffering from Down Syndrome quickly. If the child is afraid of eating and refuses to eat then transition to normal feeding is difficult. It may be necessary that the child becomes hungry as a prerequist, as with all of our therapies, but in a child suffering from Down Syndrome it might need special help to overcome their fear. These children don’t have an Autistic Spectrum Disorder (ASD), as described in a blog post, but they have also difficulties in adjusting to new situations.
Therefore it can sometimes take more time and patience until a child suffering from Down Syndrome is weaned from the tube. The child has to get a feeling of security with food and take the first steps into eating themselves. Tastes can be sweet or savory it might be starting with liquids or solids. The main thing is: The child has to like it. NoTube.com has already weaned many children with special needs. We have noticed that they need a lot of patience and have a so-called “thick skull”. We give in in them and proceed only in small steps so that they can learn in their own pace. These children might need even more patience than others. It gives us great pleasure to meet parents who can give their children this extra portion of love and time and we are happy to support them in helping their children adjust to the change.