Mr Muscles

Felix (dressed in Daddy's tank top) playing with Mummy

One of the first things Doctors will notice about a baby born with Down Syndrome is a condition called hypotonia, which in simple terms means 'poor muscle tone'. The most obvious thing you notice when you hold a baby with hypotonia is that they are very floppy and their neck and head may need extra support. It can make their joints more prone to dislocation as they are quite loose. Hypotonia can also affect breastfeeding, as the baby doesn't have strong enough muscles to latch on effectively or to suck for a long time; and when introducing solid food, the gag reflex may be affected causing difficulty swallowing which can lead to choking. Hypotonia may also affect speech development because the tongue is a muscle and if it is not working as well as it should be, it can make learning to speak quite difficult. This is one of the reasons why children with Down Syndrome will often learn to speak later than other children.

Having fun pulling everything out of the cupboard and getting patriotic!

Felix was born with hypotonia. I didn't notice it straight away because to me, all newborns feel a bit floppy anyway. It is something which, over time, has become more apparent. At 19 months of age, I notice Felix's hypotonia the most when I lift him out of his car seat or pick him up out of his cot. It is like picking up a large rag doll. As I lift his torso, his head, arms and legs fall back. I'm just glad he's not very heavy because it's like lifting twice the weight. I often call him 'Flopsy' when I have to pick him up! It's a strange thing, because Felix has always supported weight on his legs and is quite strong in some areas, but has muscle weakness in others. It's just one of those things which affects our kids in different ways. 

I am so used to Felix having hypotonia that I don't really notice it much any more and usually forget all about it. Yesterday, however, I picked up my Grandson, Noah, who is 2 weeks old and I couldn't believe the difference. He has such a strong neck and I didn't even need to support his head when I picked him up because he pulled his head and his arms and legs forward when I  lifted him. In some ways, Noah is already much stronger than Felix. Felix will always be much more flexible though.  Hypotonia makes our kids super flexible. Even adults with hypotonia will be able to twist their body into complicated yoga positions with ease, or sit cross-legged for long periods of time. Felix can sleep in the most crazy positions. If Felix and Noah are ever playing hide and seek, Noah will have to look for Felix in all the tiny hiding spots.

Hypotonia doesn't stop Felix from doing much

Despite his hypotonia, Felix amazes us with his strength in other areas. Only the other day he was determined to climb onto one of the benches at our kitchen table. After much grunting and groaning, he managed to get halfway and ended up laying straight across the bench in a 'planking' position. It was so funny! He also has an iron grip. If he has something in his hand and doesn't want to let go (very often my hair) it is almost impossible to get him to release his grip. Hypotonia will always affect Felix in some way throughout his life, but with his sheer determination I'm sure he will work out a way to do all the things he wants to do.