It is not uncommon for babies with Down syndrome to have difficulty feeding from an early age. Here are some tips to help you through these times.
By Thérèse Balmitgère, speech therapist at the Jérôme Lejeune Institute
In the first days of life, the baby may have difficulty feeding from the breast or bottle. This is explained by oral-facial hypotonia – which makes sucking difficult and causes milk to leak from the corners of the mouth – and by significant fatigue. Feeds can be long, with the baby falling asleep while drinking. Mothers who want to breastfeed may be disappointed if their child takes the bottle better than the breast, which is often the case, because bottle feeding puts less strain on the mouth muscles. These mothers often find little support from maternity teams, with everyone feeling worried if the baby drinks little or badly. The difficulties often subside after a few days, however.
There may of course be events that the baby finds “traumatic”, which will have an impact on their sensorial development, for example if they are fed exclusively via a nasogastric tube for a long period of time.
At the weaning* stage, the most common problem is babies refusing their food. The baby may have difficulty accepting food because of their slow neural maturation, meaning their motor patterns will become mature and functional after a longer than average time. The baby wants to eat small pieces of food, but is not sure how to cope with them when they are in the mouth; they don’t know how to move the food around in the mouth, chew, or swallow. It’s just a question of time.
Oral-facial hypotonia plays a role: they struggle to chew and keep their lips closed properly in order to keep the food in their mouth. They could also have tactile hypersensitivity of the mouth, and the child may find contact with certain textures unbearable, taking their time to get used to them. The gag reflex may be triggered in an exacerbated way when they select their food. These cases often lead to eating or sensory processing disorders.
Babies need to be given time to get used to new textures, and to be encouraged without force. Feel free to let them touch and play with food during and outside of meals, and encourage them to use their 5 senses. Let them see and feel their food. Children may start to experience difficulty swallowing at any age, which often manifests in their food going down the wrong pipe. Like with chewing, this is often due to an immature swallowing motor. Dysfunctional swallowing may also be the cause, however. Both liquids and solids may go down the wrong pipe. If liquid keeps going down the wrong pipe, thickening it often helps. In other cases, if the child has difficulty managing the quantity of liquid, for example, you can make them drink through a straw to avoid the risk of anything going down the wrong pipe.
*weaning is when you go from feeding your baby milk exclusively to a more varied diet. Your baby will slowly start to discover new textures and flavours.
There are also other factors. Sometimes, the child may once have suffocated on a piece of food, which has led to a fear response and refusal of food later. Medical problems may also play a part, from dental or gastric pain to GERD, which influence the behavior of the child around food. As you can see, there are many compounding issues. A child may experience one or more of these issues. You’ll need to consult with a professional to determine whether your child is experiencing slow development or other issues, make an assessment, and determine a strategy for managing it.
To find out more:
If your child has oral-facial hypotonia, regularly massaging the face and mouth muscles to stimulate them can help significantly. See our tutorial here !
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