Tongue Protrusion in People with Down Syndrome

Tongue protrusion in people with Down Syndrome

Since Felix has been born I've had quite a few people ask me why Felix, and others with Down Syndrome, often have their tongue sticking out. There are several reasons for protrusion of  the tongue in people with Down Syndrome. I'll try and explain these as best as I can.

- Babies with Down Syndrome usually have a much weaker suckling motion than other babies, often making breastfeeding very difficult. The weaker suckling, combined with a higher than average palate, means that babies with Down Syndrome will usually hold their tongue in a forward position in order to effectively feed. 

- People with Down Syndrome generally have smaller mouths and higher palates, making their tongue disproportionately big in relation to their mouth. It used to be thought that their tongues were bigger than usual, but it's actually their mouths and jaw which are smaller. 

- Very often, those with Down Syndrome have narrower airways, sometimes causing respiratory problems. As a result of this, people with Down Syndrome may have trouble breathing through their nose so will breathe through their mouth instead, thus protruding their tongue.

- The most common reason for protrusion of the tongue in people with Down Syndrome is poor muscle tone (hypotonia). Various muscles of the body can be affected by hypotonia, including the bowel (causing constipation), lungs (difficulty breathing) and limbs (affects the ability to stand, sit etc). The tongue, of course, is another muscle and can be difficult to control if the person lacks strength in that muscle. Felix will hold his tongue inside his mouth most of the time, but if he is concentrating hard or is tired it will protrude from his mouth a bit.

I explain it as being like when you or I go to the dentist and have an anaesthetic in our mouth. For a few hours afterwards, our mouth will hang open and our tongue will protrude a bit and feel huge inside of our mouth. It feels like we lack control of it's motion. If we try to talk, we sound a bit funny and may even drool a bit. This is similar to the lack of muscle strength people with Down Syndrome experience. People often say that those with Down Syndrome 'talk funny'. Try speaking out loud next time you've been to the dentist and really think about it. It's not that you don't have the ability to talk, but when you lack the strength in your tongue it affects the sound of your speech.

There are conflicting views amongst parents of children with Down Syndrome about what to do about tongue protrusion. Opinions vary from ignoring it, to pushing their tongue back inside their mouth every time it sticks out. I believe people need to do what they feel is the right thing for them and their child, causing the least distress as possible. Personally, we're not worried about it at the moment. Felix was breastfed for 18 months (which meant he had to build up some strength in his tongue, because it's harder to suck than a bottle). We have also tried to use cups which encourage him to hold his tongue in a more natural position. He does protrude his tongue sometimes, but I think we'll wait until he's older and then maybe remind him to put it back inside his mouth if he's doing it excessively. 

Little bits of news

Firstly, I'd like to say a huge thank you to those who have taken the time to read my blog. Since I began writing my thoughts about life with Felix, at the very end of February, I have had well over 11,000 people visit my blog. I really hope it has been encouraging for those of you walking the same path as I am, or for those of you about to embark on your journey with a child with Down Syndrome. For the people who are reading to become informed about Down Syndrome, I applaud you. You are those who, along with us who have someone in our life with Down Syndrome, are making a difference in the world and creating a more accepting and inclusive future.

Some fantastic text was added to a photo of Felix, by a friend of ours, to create awareness of the 'abilities' of people with 'disabilities'. This photo was then put on Facebook and within a day, has gone viral. I hope the photo touches many people and makes them think about how much people with disabilities have to offer the world. It's great to see Felix's little face pop up on my news feed over and over again! Thanks to Jim for the great job he did :)