Clinical nursing
A significant part of the cleft nurse specialist's role is to
support you in establishing a feeding regime that gives your baby
what he or she needs and works well for you as a family.
Usually, breast or bottle-feeding takes place by the lips
surrounding the nipple or teat. The baby's tongue cups around the
breast tissue or teat. Baby's tongue movement and the ability to
close off the nose from the mouth (by lifting the soft palate)
causes negative pressure to build up in the baby's mouth. This is
how babies suck and obtain the milk they need.
Babies with only a cleft lip may not have difficulties feeding,
but some may find making a seal around the nipple or teat
difficult, particularly when the gum (alveolus) is also affected by
the cleft. Specialist equipment may be needed but it may be
possible for baby to feed from a standard bottle and teat or
directly breastfeed.
Babies with a cleft palate usually have difficulty getting the
negative pressure needed for suction to occur because the cleft
causes an air leak. Therefore they usually require some assistance
to feed effectively, via specialist bottles. If you wish to
breastfeed, we are usually able to provide you with a breastpump on
loan so that you can express your milk and feed via the specialist
bottles.
Further information regarding breastfeeding can be found on the
NHS Start4Life website and the NHS breastfeeding first days webpages.
Further information regarding feeding your baby with a cleft can
be found on the CLAPA site.
The specialist cleft nurses on the team will provide you with
advice, support and equipment you need to help you feed your
baby.
Another important part of our role is to support you with
adjusting to the diagnosis you have received about your baby. As
well as providing information, we will meet with you after referral
to our team. For an antenatal diagnosis of cleft lip, we feel these
face-to-face appointments are helpful to discuss the information
provided and also for you to review photos of babies who have had
cleft lip repairs with our team. This can help you to feel prepared
for your baby's arrival and answer any questions you may have.
Feeling prepared and supported in planning for baby's potential
needs related to the cleft can help to reduce any anxiety you may
be feeling.
If your baby has been born with a cleft palate, you won't have
had time to prepare during your pregnancy as this isn't detected at
your scans. This can leave you feeling shocked and also saddened,
particularly if you need to adjust your original feeding plans. We
will support you with these feelings and provide practical help
with feeding. We can also put you in contact with additional
sources of support such as our Psychology team or other
parents/CLAPA. We regularly run Coffee Mornings across the South
West region to enable you to meet other families in a relaxed,
informal environment and all new baby referrals to our team will be
invited to attend.
Information for parents of babies with bilateral cleft
lips who require strapping
Please click on this link
for a video showing you how to make strapping for your baby's lip,
if you have been seen by a member of the Cleft Team and advised
that this is needed.
You can contact a cleft CNS via the SW Cleft Service main number
0117 342 1177 or via our team email swcleftservice@uhbw.nhs.uk
