For Families and Carers : Feeding

Breastfeeding

Almost all mothers who want to can breastfeed or provide breast milk for their baby. For some mothers breastfeeding is established easily but other may find it takes a little more time, patience, and perseverance.

Support should be available to help you if you want to breastfeed your child. Many hospitals employ a lactation consultant or have midwives with a particular interest in feeding problems.

Mother holding baby

‘I was informed before my baby was born that she would never breastfeed. It took some doing, a mixture between breastfeeding and expressed breastfeeding, but she fed for sure!’

Some babies will become better at feeding as they grow older and will be able to be fully breastfed.  Some mothers choose not to breastfeed or find that because of their circumstances, breastfeeding is not right for them.

‘I had always intended to breastfeed and, when I was told after the birth that my daughter had Down’s syndrome, I was even more determined that she would have the very best start in life that I could give her.’

A few babies have medical problems which affect feeding. Babies with gastro-intestinal tract (GI tract) disorders who need an operation will not be allowed to feed at first and will get nutrients intravenously. Some babies with heart conditions may be unable to feed immediately because they are tired or breathless; mothers of these babies can express breast milk by hand or pump to build up their milk supply. Their milk can be given to their babies by naso-gastric tube when the babies are well enough. With patience, and following surgery for any medical conditions, these babies can often fully breastfeed eventually.

‘My baby was tube fed for a few weeks until she learnt to breastfeed. She was breastfed for 22 months.’

Weaning

Babies with Down’s syndrome should be introduced to solids at the same time and in the same way as other babies. It may take them a bit longer to co-ordinate the actions needed for eating solids.

  • Introduce your child to finger foods as you would any other child, offering different textures and flavours.
  • Give your child choices and let them touch and play with different foods.
  • You may have to give your child a new food gradually and on a number of occasions before they will eat it.
Possible difficulties

Some children with Down’s syndrome experience difficulties when feeding. However, most babies born with Down’s syndrome can be breastfed, and will become better at feeding as they grow and develop. Unless you have concerns or are advised otherwise by health professionals, approach weaning and the introduction of food textures and tastes as you would with any child.

Indications your child may have a feeding difficulty are:

  • Fatigue/tires when feeding or during mealtimes
  • Breathlessness when eating or drinking
  • Coughing, choking or sneezing when eating or drinking
  • Recurrent chest infections
  • Weak, breathy, hoarse, croaky or ‘wet’ sounding voice or cry
  • Effortful or noisy swallow
  • Weight loss
  • Difficulty controlling saliva, food or drink in mouth
  • Poor lip seal (pressing top and bottom lip together) to swallow

There are several reasons why a child made have a difficulty feeding. The following are physical issues that may occur. These include:

  1. Anatomical differences

Babies and children with Down’s syndrome may have:

  • smaller mouths and jaws
  • high, narrowly arched palates
  • tongue may sit low and forward in the mouth
  1. Health problems

Feeding can be affected by a variety of health problems, including:

  • Cardiac issues
  • Gastrointestinal issues, including reflux
  • Upper respiratory tract infections
  • Enlarged adenoids and tonsil
  1. Motor problems

Hypotonia (low muscle tone) can affect babies’ and children’s ability to feed. Some babies and children with hypotonia may require extra head, body, and jaw support. Difficulties with coordinating muscles for sucking, chewing and/or swallowing can also affect feeding.

  1. Sensory and/or behaviour problems

Babies and children with Down’s syndrome can be hypersensitive to particular textures, tastes or even colours of food. They may present with behavioural difficulties around food; for example, extreme fussiness (beyond what is expected at a particular age). It may be difficult to know whether food refusal or fussiness is caused by an underlying sensory issue, or by behaviour.

Sensory issues around food sometimes arise as a result of historical medical problems and interventions. For example being tube fed when suffering from cardiac, respiratory or gastrointestinal problems, or becoming averse to certain foods because they trigger reflux. Not all children who have medical problems and interventions go on to have feeding difficulties. It is possible to alleviate the likelihood of developing sensory issues around food, for example by continuing to give a child a variety of ‘tastes’ when he/she has to be tube fed for a while, or by encouraging the child to play with different food textures.

Ask for specialist advice and intervention if your child suffers from reflux or has to be fed non-orally for any period of time so you can be given a programme to support his/her feeding development.

Some children have sensory issues around food without a known cause. In this instance, it is important to have specialist support and advice around:

  • Meal and snack time routines
  • Tastes
  • Textures
  • Temperatures
  • Colours of food (this is most relevant in children with a dual diagnosis of DS-ASD)
  • Messy play
  • Nutrition
Multidisciplinary Assessment

It is extremely important your child has a multidisciplinary assessment if you suspect he or she has any feeding difficulties. This is because poor feeding can result in other health complications further on in the child’s development. It can cause your baby to struggle with weight gain. It can also put your baby or child at risk of aspiration. Even small amounts of aspiration can result in recurrent chest infections as food enters the lungs instead of the tummy resulting in the child becoming poorly.

The following professionals may be part of the multidisciplinary team supporting your child:

  • Paediatrician
  • Breast feeding nurse or midwife
  • Specialist nurse
  • Dietician
  • Occupation therapist
  • Specialist speech and language therapist

Depending on the findings of multidisciplinary assessment, feeding can usually be managed safely with correct positioning, consistency of food and drink, special utensils including bottles, cups or cutlery and nutritional advice. A specialist speech and language therapist may advise on all aspects of feeding, including how to encourage the oral-motor movements required for feeding, for example by giving jaw support, encouraging lip closure and tongue lateralisation.

General Advice

Just like all areas of development, feeding follows a developmental path and children with Down’s syndrome are likely to be delayed in this area. Most children go through the following stages:

  • Liquid
  • Smooth puree
  • Lumpy puree
  • Mashed
  • Finger foods
  • Chopped
  • Mixed textures and sauces

When weaning and developing feeding skills with your child, progress through the same developmental stages as other children. Your child may take longer to progress through each stage. However, if you have any concerns seek advice from a professional on your child’s multidisciplinary team.

Consistency of food

If you are not confident, remember to seek advice from a specialist speech and language therapist or a member of your child’s multidisciplinary team before trying anything new. Always individualise food choices, for example, does your child have any allergies or other reason why he or she should not try a particular food?

When you are ready to introduce different tastes and/or textures to your child put a choice of two or three types in front of him/her and allow the child to self-feed with their fingers, or a spoon to experiment with different flavours. If you are confident about food consistencies your child is able to cope with then here are some ideas of finger foods to practice with:

Foods that dissolve on biting

Sweet

  • Sponge finger biscuits – which begin to soften and melt on sucking
  • Wafer biscuits
  • Some cereals, for example, sugar puffs and cheerios
  • Ice cream wafers
  • Meringues (not caramelised ones)

Savoury

  • Baby weaning crisps – there are many different brands available, the consistency should  be Cheesy Wotsit consistency
  • Prawn crackers
  • Skips

Easy to chew foods

Sweet

  • Ripe peeled pear, nectarine and/or peach
  • Cooked, peeled apple and/or pear
  • Banana

Savoury

  • Ripe peeled avocado
  • Soft cooked root vegetables for example, carrot, parsnip, butternut squash
  • Smooth pates without bits
  • Crumbly cheese, for example Caerphilly, some feta’s
  • Soft cheese if not too ‘claggy’ or ‘sticky’
  • Soft whole meal bread, without seeds, i.e. not granary
  • Soft fish
  • Soft poultry
  • Soft pasta without sauce

Chewy foods

Sweet

  • Dried fruit, for example, peach, pear, apricot, banana
  • Children’s soft fruit sweets, for example, fruity flakes and fruit straps
  • Liquorice

Savoury

  • Toast
  • Dried meats

Flavours

Stronger flavours, whether sweet, savoury or sour, increase production of saliva and give greater sensory stimulation than mild flavours. Be cautious with strong flavours if your child struggles to manage his own saliva. For some children, strong flavours give increased sensory cues to help stimulate oral motor movement, for example tongue lateralisation and chewing. It is important to seek professional advice if you are unsure how best to introduce different flavours to your child. Aim to give your child a wide range of different flavours to try.

Consider:

  • Allowing your child to eat his preferred foods. Is your child’s nutrition being compromised?
  • Making food fun – consider presentation and colour
  • Allowing independence – finger foods, allow your child to make a mess, play with food and trying to feed oneself, offer dips with finger foods so your child has autonomy to dip and taste
  • Using rewards, for example a star chart

Your child’s speech and language therapist can give you advice about feeding.

More information – If you would like some more information on feeding, the Early Support booklet has guidance on helping your child with feeding. Sometimes the best source of information is other parents. If you would like to know more about other people’s experiences with feeding bottles, please read our blog post on Feeding Bottles.’

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