Pierre Robin Sequence

Feeding Information

Feeding Advice

Most babies with Pierre Robin are naso-gastrically fed in the beginning until a feeding regime that suits them can be found. Establishing feeding with a bottle takes time and experimentation depending on the degree of difficulty. Finding the bottle that suits the best and the position that your baby does not feel that he/she is being swamped requires some patience. All babies should be offered a mixture of bottle and tube feeding as early as possible to establish a pattern of association between sucking and receiving food. Some children are tube fed for some considerable time and slowly move to taking all their milk orally others have problems that affect them for the first few weeks. Parents need expert advice and help, from specialist feeding nurses, specialist health visitors, speech and language therapist and CLAPA to provide further assistance once home. Hospitals however, should establish a good feeding pattern before any baby with Pierre Robin in discharged home.

The sheer effort of breathing and feeding for many babies with Pierre Robin means that weight gain can be slow. To help with any loss of calories supplements like Duocol are added to feeds under the instruction of a Dietician. Most babies with clefts suffer a lot with wind due to the cleft palate and babies with Pierre Robin appear to gag and vomit easily possibly due to the position of the tongue.

Weaning

It is often recommended that babies start on solid food, such as baby rice, at around four months because they find it easier to cope with food than with liquids. As with all babies solid food should be pureed initially and lumps introduced very slowly to enable you baby to learn to cope with them, otherwise they may gag and the experience will not be pleasurable. It is important for you baby to experience chewing as it is thought to be a prerequisite for speech development: teething rings may also be useful.

Discuss what is best with the health professionals looking after your baby. Whatever method is chosen time, patience and a comfortable chair will be needed.

 

Feeding Equipment

• There are various types of specialist bottles and teats only available from CLAPA. (Link to feeding equipment page) We aim to dispatch any orders within 24 hours of receipt.
• The Haberman Feeder is a specialised bottle that was designed by a mother of a child that was born with Pierre Robin. It is designed to help any baby that has a weak sucking relex. It is more expensive than other bottles but has been very successful for some babies whose degree of difficulty with sucking has been great. They are available from:

Athrodax Healthcare International Ltd
Hawthorne Business Park
Drybrook
Gloucestershire
GL17 9HP
Tel: 01594 544440

UK parents can get a reduced rate for this bottle as they can claim back the VAT. This exemption is because ‘your baby has a feeding difficulty' and therefore this type of bottle has zero tax. On receipt of an order form, cheque and VAT form, Athrodax aim to send your order by return post. Credit card orders can be taken but they will be subject to VAT.

We hold a small emergency stock of complete Haberman bottles but we do not stock the replacement valves and teats, these will have to be purchased from Athrodax.
(link to feeding equipment page)

 

Need to talk?

We have parent contacts available throughout the UK to support families affected by cleft lip and/or palate.

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Feeding Equipment

We have a range of bottles and teats available for you to purchase online or by mail order.

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