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A cleft information pack for volunteers
This pack is designed to give you some basic information about different clefts of the lip and palate, some
associated conditions, the medical treatment pathway, and the various additional support services that
CLAPA provides.
Contents
What is cleft lip and palate? ........................................................................................................... 2
What causes cleft lip and palate? .................................................................................................. 2
How is it treated? ............................................................................................................................. 2
Associated conditions ...................................................................................................................... .
Pierre Robin Sequence ........................................................................................................... 3
Stickler Syndrome.................................................................................................................... 3
Van der Woude Syndrome .................................................................................................... 3
Treatment Pathway: ......................................................................................................................... .
Antenatal .................................................................................................................................. 4
0 - 3 months ............................................................................................................................. 5
3 - 6 months ............................................................................................................................. 5
6 - 12 months ........................................................................................................................... 6
12 months - 5 years................................................................................................................. 7
6 - 12 years ............................................................................................................................... 8
13 - 20 years ............................................................................................................................. 9
21+ ........................................................................................................................................... 10
Volunteer Cleft Information Pack June 2016
WHAT IS CLEFT LIP AND PALATE?
In early pregnancy, different parts of a baby’s face develop separately and then join together. If some parts do not
join properly, the baby is born with a cleft.
A cleft lip can range from a little notch in the colored part of the lip to a complete separation of the upper lip which
can extend up and into the nose. This can affect one side of the mouth (unilateral) or both sides (bilateral), and can
be complete (meaning the cleft goes up into the nose) or incomplete.
A cleft lip can also affect the gum where the teeth come through. Again, this can range from a small notch to a
complete separation of the gum into two parts.
A cleft palate is a gap in the roof of the mouth. The back of the palate (towards the throat) is called the soft palate,
and the front (towards the lips) is called the hard palate. A cleft can affect the soft palate or both the soft and hard
palate.
You can have a cleft lip, a cleft palate, or a cleft lip and palate. A cleft palate by itself is often called an isolated cleft
palate.
WHAT CAUSES CLEFT LIP AND PALATE?
There is no single cause of cleft lip and palate. Research tells us it’s often caused by a combination of different
genetic and environmental factors.
Most of the time, a cleft is caused by genetic and environmental factors coming together in a way which can’t be
predicted or prevented. Recent research suggests that when a baby is developing there are certain genes which are
‘switched on or off’ by things in the environment, but it’s very difficult to narrow down what these are.
Remember to stress: if someone has a child with a cleft, it is very unlikely to be because of something they did or
did not do.
HOW IS IT TREATED?
Surgery is needed to repair the cleft. Cleft Teams aim to repair a cleft lip between 3-6 months, and a cleft palate
between 6-12 months. Different teams may perform surgery at different times, and research is currently underway
to see if this makes any difference to a child’s outcomes later in life.
Volunteer Cleft Information Pack June 2016
Every cleft is unique, just like every child, so the exact treatment pathway will vary. It may include further surgery to
help with issues such as speech and growth of adult teeth. It may also include speech therapy; help with hearing,
orthodontic work, etc. A Clinical Psychologist (or similar) will also be available at most Cleft Teams to work with
families or individuals at any point in the treatment pathway.
ASSOCIATED CONDITIONS
PIERRE ROBIN SEQUENCE - The condition is rare; UK statistics put it at 1 in 14,500 babies, or just under 50
babies per year. Around 50-80% of these babies have other associated conditions, with the most common being
Stickler Syndrome.
Symptoms
Small Lower Jaw
A baby with a cleft palate is
born with a jaw which is
noticeably smaller and more
receded than those of other
babies. This is called
mandibular hypoplasia or
micrognathia.
Breathing difficulties
The placement of the tongue means it
is more likely to ball up and fall
backwards into the throat, causing
obstruction and therefore breathing
difficulties. Breathing difficulties can
be very difficult to manage, so it’s
important the baby is under the care,
or at least under the supervision, of a
specialist hospital.
Cleft Palate
A cleft palate (or a high arched palate
without a cleft) may be present which can
affect the child in a variety of ways
depending on its severity. Babies with a cleft
palate often have issues with milk coming
down their nose during bottle feeding, but
this gets better as a feeding pattern is
established, the child grows and the palate is
repaired.
What does this mean? Most children with Pierre Robin Sequence grow up normally, even if they start their lives
with quite severe problems. All babies with PRS will have some difficulties, but these will vary from child to child.
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Some have no problems with breathing and only minor feeding difficulties. These babies can usually go
home shortly after birth.
Others have moderate difficulties which may mean they have to stay in hospital until breathing and feeding
patterns can be established. They may need to use a feeding tube (nasogastric or NG tube) for a while at
home.
A smaller group of babies have major difficulties in both areas, and these can persist for several months and
require the assistance of a nasal prong or even a tracheostomy.
All babies born with PRS need to be carefully investigated and monitored to make sure they can continue to take in
enough oxygen.
STICKLER SYNDROME - Stickler Syndrome is a progressive connective tissue disorder. Since one symptom of
Stickler Syndrome is a cleft palate, and another is PRS it can be hard to diagnose, as other symptoms aren’t as
obvious, the diagnosis may just be for cleft palate and/or PRS.
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Between one in 10,000 persons & 3 in 10,000 may be affected.
A person with this syndrome has a 50% chance of passing it one to any children.
o There have also been cases where it has occurred for the first time in a child. In some cases, parents
only find out they have Stickler Syndrome when their child is diagnosed.
Symptoms, and how severely a person is affected, can vary from patient to patient, even within a family, and
can be difficult to diagnose.
Volunteer Cleft Information Pack June 2016
VAN DER WOUDE SYNDROME - Van der Woude syndrome is a genetic disorder which features lower lip pits
combined with a cleft lip (with or without cleft palate), or cleft palate alone. While there are many syndromes that
involve a cleft, this is the only one which can happen with an isolated cleft lip, an isolated cleft palate, and a cleft lip
and palate.
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The syndrome can vary greatly in how it affects people, so some may not even be aware of their lip
pits, or they may have obvious lip pits and a very severe cleft lip and/or palate.
A person with this syndrome has a 50% chance of passing it on to any children.
It affects between 1 in 35,000 & 1 in 100,000 people.
TREATMENT PATHWAY
There is a 20-year treatment pathway for cleft lip and/or palate which begins at diagnosis. Not all parts of this
pathway will be relevant to all children, but it’s important to have a good understanding of what to expect over the
years and how the services all fit together.
CLAPA’s Resources for Parents throughout the Treatment Pathway
Happy Faces Groups for new and expectant parents
Parent Contacts for parents who would like to speak to someone else who can relate to their situation and share
experiences
Facebook Group for parents CLAPA has a variety of Facebook groups which can be a useful source of information
Photo Gallery of before and after surgery photos
Antenatal (before birth) Care
Local Care – Obstetric Unit or
private Ultrasound Centre
CLAPA’s Services
Cleft Unit
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Diagnosis of cleft lip at 20-week
anomaly scan, confirmed by
specialist if necessary
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Contact by Cleft Team within 24
hours of referral, usually by the
Clinical Nurse Specialist (CNS)
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Referral to local Cleft Centre
within 24 hours of diagnosis if
agreed with prospective parents
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Parents will be offered a visit from
the CNS at an appropriate time
and place
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3D/4D ‘bonding’ scans are
available for free or at a discount
in certain areas with a referral
from a Cleft Centre
Volunteer Cleft Information Pack June 2016
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Online: Information on birth and
diagnosis
0 – 3 Months
Cleft Unit
Local Cleft Clinic
Local Care
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Monitoring of child for
signs of syndromes
associated with cleft.
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Diagnosis of cleft 
palate within 24
hours of birth.
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Genetic counselling will
be offered to parents to
help them understand
why they had a child
with a cleft and what the
chances are of this
happening again. This is
available at any time,
including when the child
is grown up.
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Contact Cleft
Unit within 24
hours of birth
and/or diagnosis.
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Dental Health
education and
advice (in liaison
with the Cleft
Units)
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Visit from Cleft Nurse within 48
hours of birth, and ongoing
support, assessment and advice
following discharge home
Specialist feeding assessment,
advice and support in the use of
special feeding bottles or a
nasogastric (NG) feeding tube if
needed
Preventative dental advice and
treatment in consultation with
Cleft Unit. The aim is for the
child to have dental health just
as good as other local children
without a cleft
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Newborn Hearing screen for all
babies. Referral for ongoing
hearing assessment and
management for babies born
with a cleft palate.

Referral to Ear, Nose & Throat
(ENT) and/or audiology if
needed

Clinical Psychology Support –
parents will have access to a
psychologist, counsellor or nurse
who can help them cope with
any feelings or concerns they
have related to their child’s cleft.
This is available at all points
along the care pathway
Volunteer Cleft Information Pack June 2016
CLAPA’s Services

Welcome Pack – a
set of specialist
feeding bottles
and teats as well
as information is
sent out to
parents when
required. These
bottles and teats
are also available
to buy online or
over the phone.
Information on
Feeding and
Repair Surgeries
3-6 Months
Cleft Unit
CLAPA’s Services
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Lip Repair Surgery
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Information on Repair Surgeries
The lip repair usually takes place when a child is at least 3 months old.
The child will be assessed before any surgeries by the multidisciplinary
team to ensure they are fit enough to have the surgery and to help
monitor the ways in which the child will change afterwards. Parents will
be able to ask any questions about their child’s care at this stage.
Timings of surgeries may vary, and the surgery date can be pushed
back for a number of reasons – parents should always talk to their Team
if they have concerns.
The Cleft Team will be able to help parents prepare for surgery, as well
as give advice and support regarding aftercare.
6-12 Months
Cleft Unit
Local Cleft Clinic
CLAPA’s Services
Palate Repair Surgery
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The palate repair usually takes
place between 6-12 months.
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The child will be assessed before
any surgeries by the
multidisciplinary team to ensure
they are fit enough to have the
surgery and also to help monitor
the ways in which the child will
change afterwards. Parents will be
able to ask any questions about
their child’s care at this stage.
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Timings of surgeries may vary,
and the surgery date can be
pushed back for a number of
reasons
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The Cleft Team will be able to help
parents prepare for surgery, as
well as give advice and support
regarding aftercare.
Volunteer Cleft Information Pack June 2016
Hearing test at 7-10 months
for babies with a cleft palate,
as well as annual hearing
tests up to 5 years or as long
as is required. Treatment as
necessary
Information on Repair Surgeries
12 Months – 5 Years
Cleft Unit
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Local Cleft Clinic
Speech and Language Therapy
Assessment – This usually takes
place at around 18 months.
Treatment will be offered if
necessary, but the need may not
become apparent until the child
is older.
o A further assessment
takes place at around 3
years old, and treatment
is recommended if it’s
needed. Assessments
for speech problems at
this and later stages
may involve a
nasendoscopy or
videofluroscopy.
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Psychological Support for
families if requested prior to
school entry.
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Paediatric Dentistry advice
and/or treatment if necessary.
This is available along the
entire treatment pathway.
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Full assessment by Cleft Team –
a child with a cleft should
receive a full assessment by all
specialists in the cleft team at
age 5, to ensure that any
ongoing or emerging issues are
being dealt with appropriately.
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Surgery to revise lip, or speech
(velopharyngeal) surgery if
necessary. These are available
throughout the entire pathway
when needed.
Volunteer Cleft Information Pack June 2016

Audiology assessment of
children with a cleft palate
at regular intervals up to
and including 5 years (5
year assessment may be at
Cleft Unit).
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ENT assessment if
necessary
Local Care
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Speech and Language
Therapy – This will be
provided by local therapists
in consultation with the
specialist from the Cleft
Team. The aim is for all
children to have good
quality, intelligible
(understandable) speech by
age 5-6.
6 – 12 Years
Cleft Unit
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Orthodontic Assessment
and Treatment – An
orthodontist will monitor
the position of the child’s
teeth, including their
adult teeth when they
start to come through.
Treatment may be
needed to correct their
position, which often
includes fitting braces.
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Speech and hearing
checked and managed for
children with cleft palate.
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Psychological Support for
families if requested prior
to school transfer, or to
help with any issues such
as bullying or selfconfidence.
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Full assessment by Cleft
Team at age 10, including
for orthodontic
treatment.
Local Cleft Clinic
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Alveolar Bone Graft (ABG)
Assessment and Surgery
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This involves taking a
piece of bone from the
hip and placing it in the
gap left by the cleft so
adult teeth can come
through properly.
Between the ages of 7
and 9, a child will be
assessed by the team’s
orthodontist, paediatric
dentist and the surgeon
responsible for ABG
surgery to see if it is
necessary.
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If it is necessary, the
preparation for the
surgery as well as the
surgery itself will usually
Volunteer Cleft Information Pack June 2016
Ongoing
management of
speech and
hearing issues
Local Care
CLAPA’s Services

Dental and
Orthodontic
treatment
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Residential
Weekends for
9-15 Year Olds
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Speech and
Language
Therapy from
local therapists
in conjunction
with the
specialist from
the Cleft Team
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Private
Facebook
Group for
under 17s
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Children and
Young People’s
Council (CYPC)
for 9-17 Year
Olds
be completed by 12 years
of age, with a follow-up 6
months later.
13 – 20 Years
Cleft Unit
Local Cleft Clinic
Local Care
CLAPA’s Services
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Residential Weekends
for 9-15 Year Olds
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Private Facebook Group
for under 17s with a cleft
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Children and Young
People’s Council (CYPC)
for 9-17 Year Olds
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Adult Voices Council for
18+ Year Olds
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‘Adult Voices’ Facebook
Group for over 18s with
a cleft
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Peer Contacts
Orthognathic Assessment and
Surgery
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Information aimed at
teenagers with a cleft
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Orthognathic surgery involves
re-aligning the jaws to change
the appearance of a person’s
profile. This is usually offered to
patients who have an underbite,
and is usually completed after
their face has finished growing
at 16-18 years old.
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Information aimed at
adults with a cleft
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There is a lot of planning,
assessment and preparation
involved with this surgery,
including orthodontic care
before and after. The Cleft Unit
can offer more information.
Offer of genetic counselling for
patients interested in the causes
of their cleft and how likely they
are to pass it on to any children
they have (‘hereditability’)
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Full assessment by Cleft Team
at ages 15 and 20 (if necessary).
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Discharge from Child Cleft
Services between ages 16-20,
including final discharge
appointment. Patients may be
referred on to adult services to
continue their treatment if
necessary, or they can get a
referral later in life from their
GP or dentist.
Surgery as Required
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Surgery may be required or
requested for a number of
different reasons, e.g.
rhinoplasty (surgery to change
Volunteer Cleft Information Pack June 2016
Ongoing
management of
speech and hearing
issues
Paediatric and
restorative dental
care in liaison with
Cleft Unit
Ongoing
orthodontic
treatment
the shape of the nose), dental
surgery, lip revision, speech
revision, palatal fistulae closure
(closing small holes in the
palate), etc.
21+ Years
Treatment as required
Adults may re-enter the cleft service at any time for a consultation about any aspect of their care,
including psychological support, genetic counselling, and specialist dental treatment, all of which is
available on the NHS if it is deemed necessary.
Adults can get a referral to the Cleft Unit from their GP or Dentist.
CLAPA’s Services
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‘Adult Voices’ Facebook Group for over 18s with a cleft
Adult Voices Council for 18+ Year Olds
Peer Contacts
Parent Contacts who have a cleft themselves
If you would like more information on different types of clefts, associated conditions, the treatment pathway and
anything else not covered on this information pack please visit www.clapa.com
Volunteer Cleft Information Pack June 2016