Feeding and weaning your child

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Feeding and weaning your child

Jan 25, 2024

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Important – individual needs vary!

Parents should obtain advice from their maternity and child health nurse, paediatric dietitian or other health professional regarding which method would best suit their baby.

Using this guide

This information is intended to advise you, your babies’ dietitian, and speech therapists on the best ways to assist your baby to feed.

Various methods, techniques and equipment are mentioned here, but you as a parent are advised to consult with your child’s dietitian, speech therapist, health nurse or paediatrician before trying any of these methods for yourself.

The importance of good early feeding patterns

Good early feeding patterns are not only important for adequate nutrition, but to establish a pleasant feeding experience. This might seem ironic when you will later learn that a desire to over-eat can become a problem. But let’s aim for a good start to enable a positive feeding experience for you and your child, alleviating some of the stress for parents and other family members.

Good oral muscle movement patterns will help later with speech development.

Sucking movements contribute to flattening the palate so, if this is possible for your child, it could help prevent a high palatal arch.

Many different support options exist, ranging from specialized teats to tube feeding. In some cases, specialized formulas may be required to help your baby gain weight. Getting health professional support to make the right choice for your baby and to get the right start in life is highly recommended. There is no one right approach. All options should be explored.

Your “floppy baby”

Babies with Prader-Willi syndrome (PWS) have varying degrees of hypotonia (low muscle tone). This can make your baby appear ‘floppy’ often making it difficult for them to maintain a good position for feeding.

Suck is generally weak, because of lack of tone in the facial muscles. Your child can become exhausted from the effort of maintaining the sucking action long enough to take in sufficient milk.

Also, because of low muscle tone, most babies with PWS have a weak cry or cry very little, so they might not be clearly heard when calling you for attention.

PLEASE NOTE! This information does not replace guidance from any health professionals in individual cases.

Tube-feeding and oral feeding

Many babies living with PWS will require tube-feeding in the early days or weeks. This should be discontinued as soon as your dietitian or medical team considers it possible.

In some babies their swallow can be too uncoordinated or their suck too weak to enable sufficient oral feeding. In this case, continued tube feeding allows for the safe delivery of appropriate nutrition to support optimal growth and development.

Unless there is a medical reason (such as food aspiration), oral feeding is beneficial alongside tube-feeding to stimulate the oral muscles and allow your baby to experience the taste and touch aspects of feeding.

If oral feeding is not possible, oral play should take place where baby is introduced to a dummy, or their own fingers placed into their mouth. This is especially beneficial during tube feeding so that oral sensation will be associated with food and the satiation of hunger, although the sensation of satiety does not always appear in individuals with PWS.

If your baby is coping with swallowing saliva without choking, even if they cannot be fed orally, it is safe to introduce small tastes of pureed food by placing a tiny amount (1⁄4 teaspoon) on the tip of the tongue.

For some babies it is not clear whether their swallow is safe. A speech therapist with a specialist feeding qualification can assess this. Occasionally the therapist will arrange a videofleuroscopy test to provide a moving image of your child’s swallowing reflex, in real time.

Breast feeding/bottle feeding

The first nutritional choice for a family of any child is the source of milk. Breast feeding has wide and long-lasting health benefits for any child and is encouraged. However, either method of feeding (bottle or breast) can present challenges for the child living with PWS due to weak suck strength and sleepiness. Breast feeding can be very difficult, although breast milk can be expressed for use in a bottle.  For detailed guidance, refer to the brochure Breastfeeding a baby with PWS, 2020.

Good feeding practice: breast and/or bottle feeding

Position

Hold your baby on your lap so that you have your hands free, one to hold the teat, nipple, or bottle, and the other to stimulate your baby’s face, or assist with lip closure or swallowing.

You can achieve this position using a pillow, or by resting your arm on a chair arm. There are also special feeding support pillows available to rest your baby on so that she is facing you. An occupational therapist should be able to help you obtain one of these or use the internet for “feeding support pillow”.

Preparation

Before introducing the nipple or bottle teat into your baby’s mouth, it may help to stimulate their lips and tongue. Use your finger to gently tap or stroke your baby’s tongue, stroke, then tap the cheeks and then around the lips. Use firm but gentle pressure, rather than too soft, as it may tickle rather than stimulate sucking!

Use a spoon handle or soft toothbrush to introduce different sensations. Finally, stroke your baby’s tongue from back to front with gentle, rhythmic strokes – this may help to establish the rhythm for sucking. At the very least, baby should be well awake by now!

Techniques

Lip closure

Try placing a soft bottle teat over your nipple if breast-feeding. This means that you can help your baby to suck by pressing on the teat, and it may help aid latching on. If the seal is very poor you can help by placing two fingers, one above the top lip, and one below the bottom lip, to help with improved lips closure.

Sucking

Your baby’s suck can be supported by placing your fingers on their mid-cheeks and gently applying pressure, stroking from mid-cheeks to lips. Once they are sucking, gently tug on the bottle or pull back the nipple to stimulate holding on. If your baby tires easily, it may help to increase the regularity of feeds.

Swallowing

If your baby sucks but does not swallow, stroke gently from just under her chin to the top of the breastbone with a one-way, downward movement. If their head is very ‘floppy’, you may need to establish jaw support by placing one finger under her chin, or using the thumb and one finger, one each side of their face. With practice, this can sometimes improve swallowing.

Cup Feeding

If your baby cannot suck sufficiently using either breast or bottle, it is possible to introduce a cup. Use a small flexible plastic cup. Those supplied with medicines are sometimes sufficient, although the edge must be smooth. There is also a special ‘flexi-cup’ on the market.

Place the cup on your baby’s bottom lip, very slowly tip the liquid into the mouth, then stimulate swallowing, if necessary (as above).

Sometimes using a thickener may help to reduce aspiration (food or drink breathed into the lungs), but please consult your speech and language therapist about this.

Spoon Feeding

A spoon is traditionally introduced when solids are started. If your baby has a very weak suck, it may be possible to increase the quantity of milk taken by spoon-feeding the last of the bottle, or combining the cup and spoon together so that the change in stimulus to your baby’s mouth will enable more to be introduced.

Equipment

There are several specialist bottles on the market. These include:

  • The MAM teat – A soft orthodontic shaped teat vented to assist the elimination of air.
  • Mead-Johnson bottle – a soft bottle that can be gently squeezed to help the baby to suck.
  • Medela Haberman Feeder – A specialised bottle designed to help babies with sucking problems. It has a valve in the neck to prevent milk flowing back into the bottle so that the baby need not suck so hard to get the next mouthful.
  • NUK bottles – used at many hospitals and can sometimes be provided by them, or by a speech therapist.

Most specialised bottles necessitate specific ordering. Your local children’s hospital, child health nurse, speech therapist or occupational therapist can sometimes help.

Weaning

Many babies living with PWS  may struggle to gain weight in the first year. Weaning, the process of introducing solid food to a baby, is an important milestone and improves nutritional status.

The World Health Organisation recommends weaning start at 6 months. Signs that your baby is ready for solid food:

  • they can hold their head up without support
  • they can sit up with support, such as in a high chair
  • they can control their tongue and do not stick it out when given food.

Some babies with PWS may be advised to start earlier than six months, as they might find it easier to take semi-solids from a spoon, rather than sucking.

Seek individual advice. Discuss when to start weaning with your child’s community health nurse or paediatrician. A dietitian’s advice is probably needed too.

Use commercially available foods, or make your own by cooking vegetables, fruits, and/or rice (without salt or sugar). Refer to the Australian Infant Feeding Guidelines for details.

Feeding and weaning your child

Weaning for all children should be fun and enjoyable for everyone involved. The introduction of a wide variety of taste, textures and colours is fundamental to the process.

About 1 year old

By the time your baby reaches a year old, they should be eating much the same food as the rest of the family. This does not, of course, include things like chips, biscuits, and sweets!

However, don’t worry if they haven’t reached this stage yet – many children living with PWS do have problems adjusting to new foods or coping with lumpier food, and may take longer than usual to be completely weaned.

If lumpy food is a particular problem, try introducing it more gradually by starting with very small lumps and increasing the lumpiness very slowly as they become familiar with the texture.

Establishing healthy eating

Once your child is eating a good range of textures and flavours, it’s time to think about how you will manage your child’s diet and food access in the future. Many different dietary and access approaches for children living with PWS exist and have been studied, but it is unclear if any one of these is more successful than another.

It is a good idea to discuss the different strategies with your team and choose a method which best suits you and your family.

Regardless of which you choose, it is likely sticking to a structured, consistent approach contributes significantly to positive success and weight management. You may have to change some aspects as your child gets older but a routine with predictable and stable structure will help to develop healthy eating habits.

Educate family members

In respect to diet and secure food access, it is important that those around you and your child understand the reasons for food restrictions and the healthy eating regime you are establishing. It may be particularly difficult for others to understand if your child shows no obvious outward signs of having PWS. To avoid difficult situations, encourage non-food-based treats.

Further information

Thank you ….

to Libby Johnson (Aust.), Prader-Willi Research Foundation of Australia, PWSA UK, Fiona Whyte (Clinical lead Speech and Language Therapist, Greater Glasgow and Clyde SLT service) and Chris Smith (Senior Paediatric Dietitian, Royal Alexandra Hospital, Brighton) for the original source material utilised in developing this resource.

Get in touch

We welcome enquiries about anything related to PWS. This could be about the changes through the life stage of living with PWS, individual needs, services, getting help or interacting with the NDIS, the Quality and Safeguards Commission or the AAT.

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