Assessment Process and Team Members
Eat, Nose and Throat
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 3-6 months of age, and the repair of the cleft palate occurs between 6-9 months. 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. How long does the operation usually take?
This depends on the type of surgery that is being performed. Your Plastic Surgeon will be able to estimate at the time of preoperative consultation.
4. How long will my baby be in hospital?
Again, this depends on the type of surgery that is being performed. The stays vary from 1- 5 days in hospital.
5. Can I stay at the hospital with my child?
Yes, the hospital provides a sofa bed for one parent to sleep on, beside the child's bed overnight, at no cost. For parents from long distances these types of accommodation and overnight rooms are also available for more than one parent.
6. Who do I ring if I have a problem once home after the surgery?
The Cleft Lip and Palate Nurse Consultant is available as a resource person for you once you are home after surgery. The problem will attempt to be resolved, and otherwise it can be referred to the appropriate person.
7. My baby has a cleft lip only. Can I breast feed?
Babies born with a cleft lip don't usually experience feeding difficulties. In most cases, your baby will still be able to breastfeed. If you have access to the Internet, The Children's Hospital has a Fact Sheet on
www.chw.edu.au/parents/health/factsheets titled Cleft Lip and/or palate - feeding your baby, which will provide further information.
8. My baby has a cleft palate only. Can I breast feed?
If your baby's cleft is narrow and limited to the soft palate, he or she should be able to use the front part of the hard palate to suckle the nipple.
9. My baby has a cleft lip and palate. Can I breast feed?
In most cases, these babies 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.
10. 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 i.e. reducing the use of dummies, introducing the spout feeder.
11. After the lip operation when can my baby be breast fed?
After the cleft lip repair you are able to immediately breast feed.
12. 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.
13. After the palate operation do I have to continue feeding with a cup/spout?
The use of the spout feeder, attached to the squeeze bottle or cup, should be maintained for two (2) weeks postoperatively.
14. When can I...
Take the arm splints off?
Should be worn for two (2) weeks postoperatively.
Give a dummy?
A dummy should not be reintroduced for two (2) weeks postoperatively.
Start solids/puree again?
The infant can commence on a puree/sloppy diet the next morning after surgery. Slowly grading up in texture over 4 weeks.
15. When will the surgeon see my baby after the cleft lip and/or palate repair?
You will have a follow-up appointment with the Plastic Surgeon between 6-12 weeks post surgery, depending on the surgeon's request. This will take place in the Cleft Palate Clinic or in the private rooms.
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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 the 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.
Some idea of the orthodontic needs and timing of treatment would have been provided.
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. Your child should have regular check-ups with your family dentist.
4. My child is complaining about having a sore tooth, should I make an appointment at the Cleft Palate Clinic?
No see your family dentist. The tooth may be painful, and you may need to see a dentist urgently. If there is no family dentist then come to the Cleft Palate Clinic.
5. Should I let the dentist pull any teeth out?
No, unless requested by the orthodontist at the Cleft Palate Clinic.
6. 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 required 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 8 and 11 years and orthodontic treatment will start 6-9 months beforehand.
7. I couldn't afford to pay for my child to have orthodontics; I believe it is very expensive.
If your child is registered under the medicare cleft palate scheme then medicare will pay for 85% of the recommended schedule fee. You have to pay the difference - this depends on the orthodontist treating your child. If you attend one of several hospital orthodontic clinics, then there is no gap fee, however, you may be assigned to a training student in orthodontics for treatment. There could also be a lengthy waiting period for treatment.
8. 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; only a small soft tissue scare will be present after bone grafting.
9. Where the cleft goes through my gum, I have a tooth growing there. Will that tooth stay or will it be pulled out?
It depends on the size and shape of the tooth and if it is a permanent tooth. Eventually, most teeth, either primary "baby" or permanent, growing in the cleft gum are removed once orthodontic treatment is commenced.
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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 - in particular, 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 0.5-1% 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 baby keeps pulling at his/her ear, should I make an appointment at the Cleft Palate Clinic?
When babies pull at their ears and seem to be troubled by this, it usually suggests that there is something wrong with his/her ear. It is possible that they may have some wax present or an infection in the outer ear, but this could also indicate that there is fluid present in the middle ear.
If grommets have already been inserted, the grommets could be infected or blocked. An appointment should be made with your local GP, but if there is any concern or your doctor has difficulty seeing the tympanic membrane, then an appointment with the Cleft Palate Clinic needs to be arranged.
4. My child's ear is red and a little bit "runny", should I make an appointment at the Cleft Palate Clinic or could I take my child to our local GP?
A reddened ear with discharge should be assessed by your local GP. If the discharge is of mucoid appearance (similar type of discharge from nasal cavity with a cold), then it implies there is an infection in the middle ear. Your child will require treatment.
Grommet tubes certainly do not discharge at any stage, unless there is an infection present, which needs to be treated with antibiotics and possibly ear drops.
5. I have taken my child to see my local doctor about his ears a number of times, and he has given me antibiotics but they haven't made any difference. Should I make an appointment to see an Ear, Nose and Throat specialist?
If your child has had numerous courses of antibiotics or if the doctor believes that your child has middle ear problems and it is not settling, then it is advised that you discuss this with your doctor and a referral for a consultation with an ENT specialist be arranged or to contact the Cleft Palate Clinic.
6. 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.
7. 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 (term - nasal septum). 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.
10. I don't think my baby is hearing very well, what should I do?
Your baby's hearing can be tested at any age. With the New Neonatal Screening Program in NSW, most babies are tested soon after birth.
If you feel or believe that your baby's hearing is decreased or is not hearing or if a screening test has fails to prove any abnormality, please contact the Cleft Palate Clinic for recommendation for hearing tests which can be performed at any local major hearing centre, or alternatively, this can be arranged at the Children's Hospital @ Westmead by the Cleft Palate Clinic.
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1. Will my child have hearing problems, due to the 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 throughout your child's hospital visits to the Cleft Palate Clinic.
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 5 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.
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