Cleft lip and palate services at The Children's Hospital at Westmead

Contact details: 

Enquiries: (02) 9845 2079

Fax: (02) 9845 2078

Location: Speech Pathology Department, Outpatients Street, Level 2

The Cleft Palate Clinic at The Children's Hospital at Westmead helps newborn babies born with cleft lip or palate. Surgery options are available and ongoing support is given for speech and feeding as the child develops.

Clinic

 

Location

Speech Pathology Department / Child Assessment Centre

Appointments

Ph: (02) 9845 2079
Fax: (02) 9845 2078
E-mail: SCHN-CHW-CleftPalateClinic@health.nsw.gov.au

Consultants

Plastic and Reconstructive Surgeons

Dr. Peter Hayward (Head of Team)
Dr. Robert Gates
Dr. Sandrine Roman
Dr. John Vandervord

Ear Nose and Throat Surgeons

Dr. John Curotta

Dr. Piera Taylor

Orthodontist

Dr. Julia Dando (Honorary)

Speech Pathologists

David Fitzsimons
Anna Cronin

Clinical Nurse Consultant

Nicole Coburn - Cleft Lip, Palate and Craniofacial

Administration Officer

Melissa Michael

Clinical Photographers
Paul de Sensi
John Yeats

Clinic Days

Thursday

Method of referring

Telephone contact with Cleft Palate Clinic Secretary, followed by written referral from medical officer faxed or forwarded to the Cleft Palate Clinic. Appointments cannot be arranged until the referral has been received and triaged.

Function of the clinic

Assessment and management of children with cleft lip and/or palate and velopharyngeal dysfunction

Special interests or
sub-specialty clinics

Velopharyngeal Insufficiency  (VPI) Clinic
The VPI Clinic is a satellite clinic of the Cleft Palate Clinic and provides speech pathology assessments for patients with suspected velopharyngeal insufficiency. Medical referrals are also required for this Clinic.

Referral procedures for newborn babies

Please phone the Cleft Palate Clinic Secretary on (02) 9845 2079 or Clinical Nurse Consultant  on (02) 9845 1118, preferably within the first 48 hours of birth, followed by written referral from medical officer faxed or forwarded to the Cleft Palate Clinic.

Referral Procedures for the Cleft Palate Clinic

Please phone the Cleft Palate Clinic Speech Pathologist on (02) 9845 2079, followed by written referral from medical officer faxed or forwarded to the Cleft Palate Clinic.   

Velopharyngeal Insufficiency Clinic

The VPI Clinic is a sub-clinic of the Cleft Palate Clinic and provides speech pathology assessments for patients with suspected velopharyngeal insufficiency. Medical referrals are also required for this Clinic.

Clinics assessment process

All newborns with clefts of the lip or palate should be referred to the Cleft Palate Clinic as soon as possible following birth. The referring hospital or doctor should phone the Cleft Clinic secretary on (02) 9845 2079 and fax a written referral to (02) 98452078. The Cleft Palate Clinic Secretary will notify the Cleft Lip and Palate Nurse Consultant immediately and if the infant is born within the Sydney Metropolitan Area, the Nurse Consultant will visit the newborn and family at the maternity hospital. If the maternity hospital is outside the Sydney Metropolitan Area, the Cleft Lip and Palate Clinical Nurse Consultant will make telephone contact with the referring health professionals and the caregivers.

If pre-surgical management of the cleft is required, usually the use of a mouth plate, then an appointment will be arranged for the infant and caregivers to be seen by one of the Clinic's orthodontists. Sometimes this appointment occurs before the newborn's first Cleft Palate Clinic appointment.

Follow up process

The aim of the Cleft Palate Clinic is to assess the newborn with a cleft condition within the first two to four weeks following birth. You will be notified of your appointment time as soon as possible.

The Cleft Palate Team is multidisciplinary and undertakes assessment and surgical management of children with cleft lip and/or palate and velopharyngeal incompetence. The frequency of follow-up appointments in the Cleft Clinic will depend upon your child's condition.

Follow-up appointments in the Cleft Clinic will be arranged by the Clinic's secretary and will be posted to your home.

Please ensure that you notify the Cleft Clinic of any changes to your contact details.

Where is the Cleft Palate Clinic?

The Cleft Palate Clinic is held in the Children's Assessment Centre, located on Level 3 of The Children's Hospital at Westmead. The clinic is accessible by stairs and a lift.

Frequently asked questions

Plastic surgeon

1. My baby was born with a cleft lip and palate, at what age will my baby be operated on?

Generally the repair of the cleft lip occurs between three to six months of age and the repair of the cleft palate occurs between six to nine months of age. This can vary depending on the child's cleft and the general health of the child.

2. How many operations will my child need?

This will depend on the type of cleft that your child has and will be decided after you see the Plastic Surgeon at the Cleft Palate Clinic

3. To prepare for the lip and or palate operation what do I need to do about feeding?

The Cleft Lip and Palate Nurse Consultant will discuss the preparation with you at the Cleft Palate Clinic or in the Pre Admission Clinic. There are a few things that can be done to attempt to make the postoperative pathway smoother, such as reducing the use of dummies and introducing a spout feeder.

4. Can I breast feed my baby with a cleft lip or palate?

Babies born with a cleft lip only don't usually experience feeding difficulties. In most cases, your baby will still be able to breastfeed. If your baby has a cleft palate only, they should be able to use the front part of the hard palate to suckle the nipple if their cleft is narrow and limited to the soft palate. In most cases, babies with a cleft lip and palate are unable to breastfeed. This is because they do not have a separation between the nose and mouth, so they cannot create enough pressure to suck effectively from the breast. They usually feed successfully with bottles and teats specifically designed for babies with clefts.

5. I wasn't breastfeeding before the palate was repaired. Will I be able to breast feed after the palate is repaired?

If the baby has not been breastfed prior to surgery, breastfeeding may be difficult to establish following surgery. Ways to maximise the chance of the baby successfully breastfeeding following surgery can be discussed with the Cleft Lip and Palate Nurse Consultant or Speech Pathologist.

Orthodontist

1. My baby has a tooth growing in the palate, what should I do?

Usually this is a common occurrence with cleft conditions and generally they do not cause any serious problems. Report it at your child's next clinical assessment. You will be given advice on this and other dental problems on the routine visits.

2. My child's teeth are all crooked, should I see an orthodontist?

Normally you would have been given advice regarding the condition and development of the bite during visits to the cleft clinic. If you are still uncertain, then you should see your dentist first who will refer you to a specialist orthodontist for an opinion. You can also discuss this with the consultant orthodontist at the Cleft Palate Clinic.

3. Should I take my child to see a dentist or just wait until I have an appointment at the Cleft Palate Clinic?

There are great benefits in seeing your family dentist for regular dental care, regardless if there is a cleft condition or not. However, do not let any teeth be removed without consultation with the Cleft Palate Clinic orthodontist. Also consult us before having any orthodontic treatment.

4. I have been told my child will need to have orthodontic work and then a bone graft. When will orthodontics start and when will the bone graft be done?

Generally, not all cleft conditions require bone grafting. Some may not even need orthodontic correction. However, if there is an alveolar-bone defect, then bone grafting is carried out between the ages of eight and 11 years and orthodontic treatment will start six to nine months beforehand.

5. I understand that when the bone graft is done some bone will be taken out of the hip; can you tell me what this means?

The hip becomes the donor site for bone that is required to "fill-in" the defect in the cleft region. It is preferable to use the patient's own bone material (autogenous) as this reduces the risk of rejection after surgery. The hip is used because there is a plentiful supply of bone formed. Your child's leg will stay the same length and shape and only a small soft tissue scar will be present after bone grafting.

Ear, nose and throat

1. My child had grommets inserted recently - now blood is coming out of the ear. What should I do?

Bleeding from the ear usually implies infection from around the grommet tube site. The blood rises from tissue (granulation tissue) which is one of the body's processes to combat infection and foreign bodies. The grommets are inert foreign bodies, but if they become infected, they promote the surrounding tissue to produce this granulation tissue which will usually bleed. The treatment for this is topical drops - Chloramphenicol eye drops into the ear or Ciprofloxacin hydrocortisone.

2. What does it mean when the doctor says my child has a perforated ear drum? Should I be concerned?

A perforated ear drum means that there is a small hole in the ear drum. A grommet tube maintains a small hole in the ear drum so that air can pass freely into the middle ear to allow the middle ear membrane to function normally.

However, when a grommet extrudes, there is a very small chance that a small perforation will remain. This is at times related to the scar tissue in its edges. Approximately 50% of these perforations will heal spontaneously.

If the perforation is large, this may indicate that a severe infection has occurred at some stage in the ear drum and the layers of the ear drum have been damaged. In children, sometimes these perforations will heal, but often they may require a repair (term - tympanoplasty or myringoplasty). This is not usually performed until the ENT specialist is sure that the child is not going to have any further ear infections.

3. My child was born with a cleft palate. His speech is good but it is very hoarse. Should I see an Ear, Nose and Throat doctor, or should I get an appointment at the Cleft Palate Clinic?

A hoarse voice in a child with a cleft palate is unusual and is not frequently seen at the Cleft Palate Clinic. Therefore, an ENT specialist should assess your child and the Cleft Palate Clinic notified. An ENT member of the Cleft Palate Clinic may be available to assess your child if another associated appointment has been arranged there.

4. What is a septoplasty for? What does the surgeon do when he does a septoplasty?

A septoplasty is a correction of the midline partition of the nasal cavity. The septum is straightened when it is believed that deformity of this partition is causing significant obstruction to your child's airway - not being able to breathe through his/her nose or more rarely, develops prolonged infective symptoms whenever they develop a cold, suggesting that an underlying sinusitis may be occurring.

The septoplasty can be performed at any age. However, this does need to be discussed with all members of the Cleft Palate Team.

8. I live a long way from the hospital, can I see an Ear, Nose and Throat specialist near where I live?

If your child has ear, nose and throat problem, it is worth discussing this with your local GP and asking him/her to refer you to a local ENT specialist. The records of your child at the Cleft Palate Clinic are always available to your local GP or specialist, if any information is required.

If any surgery is recommended by the local ENT specialist, it is always worthwhile for the specialist to check with the Cleft Palate Clinic (he/she may be unaware that other surgical procedures are being considered) to enable the procedures to be coordinated.

9. I don't want to travel all the way to the hospital for my child to just attend for a hearing test; can I have the test done locally?

Yes, hearing tests can be performed locally. However, the results must be forwarded to the Cleft Palate Clinic for review by the members of the team.

Audiology

1. Will my child have hearing problems due to their cleft palate?

Children born with cleft palates are at risk of hearing problems, therefore it is important that hearing be assessed early and then at regular intervals.

2. How will these hearing problems be picked up?

Children with cleft palates have more middle ear problems and this can affect their hearing, so that is why all cleft palate children have regular hearing tests.

3. How soon will my baby's hearing be tested, after birth?

Hearing can be assessed from birth and is usually done within the first five weeks of life. These early tests can usually only be conducted at specialised centres, including this hospital but later tests can be arranged through your Early Childhood/Baby Health Centre.

4. What will happen if my child's hearing is affected?

The specialised audiologists at the Cleft Palate Clinic can do a number of specialised tests and will provide information and guidance about ways of managing hearing loss if this is present. Satisfactory hearing is essential for the development of language and learning skills.

Cleft Lip and Palate Scheme

The Department of Human Services has a cleft palate/lip scheme.