Everything About Cleft

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The Different Types of Cleft

0A cleft can be a gap on one side (unilateral) or two gaps (bilateral). A cleft palate occurs where the cleft is in the roof of the mouth creating an opening into the nasal cavity. A cleft can be of the soft palate at the far back of the mouth, involve a missing or split in the uvula. Hard palate clefts involve the bony part of the roof of the mouth.

A cleft of the hard palate may be a split from the front or back toward the centre, or more rounded. Cleft lip may extend from the lip backwards into the mouth and affect the alveolar ridge where teeth belong later and into the hard palate. There are many combinations of cleft lip and cleft palate. A cleft which is completely on the inside of the mouth is very difficult to detect on ultrasound.

To the casual observer there is often nothing about the child’s outward appearance that would suggest a cleft palate. Children with a cleft lip experience quite an amazing transformation from their appearance as a newborn to when the first surgery occurs usually at 3-6 months of age.


Cleft Feeding Advice

Getting Ready

Oftentimes when a cleft palate is diagnosed prior to birth, parents will not be sure how much of the palate is cleft, and therefore are unsure how to prepare for feeding. With the assistance nursing staff and midwives, your cleft newborn will receive nourishment from you by specialist feeding equipment designed to assist them in all the ways they need.

It is important to remember that babies with a cleft palate will not be able to produce adequate suction, and the effort of feeding will tire your baby quickly without assistance. Ask for a review with your lactation consultant as soon as you can after your baby’s arrival.

Feeding a cleft baby

Breastfeeding a cleft baby is not impossible, and many women will report various experiences with feeding their newborns. Most babies with a cleft will need additional help to get the necessary amount of milk for nutrition, however, your child’s condition and feeding style will be assessed and specialist feeding equipment may be recommended by your doctors and therapists.

To further assist with feeding, we do offer our Newborn Hospital Support Bag, which includes an innovative & useful SpecialNeeds Feeder.

Extra Encouragement

The first time feeding your cleft baby, you will want to seek assistance of nurses, midwives, and lactation consultants. Learning about the experiences of others can also be very useful and comforting, however as always, check your source is trustworthy and if you have any questions or concerns, consult your health care professional such as your GP or Speech Therapist.

Cleft Treatment Phases

Lip Repair

At around 4 to 6 months of age, this surgery is performed by a plastic surgeon, and you can expect to spend around three days in hospital. Your child’s surgeon will advise you on all post operation care, and it is best to call the contact number given at discharge if you have any problems. We can’t stress enough how important it is to follow the guide lines set out by your doctor, as it can effect the outcome of the repair if you don’t. If you are having any problems first call the hospital, if you can’t get though please call us any day or night.

Older children can come with you to the hospital to be apart of this important moment, and there is commonly a Ronald McDonald House for accommodation near the Children’s Hospital/Ward in all major city hospitals.

Palate Repair

Palate repair is done around 8-12 months of age. It is where the plastic surgeon will take some skin already in the baby’s mouth, and use it to close the gap in your child’s palate. Again, post operation care needs to be strictly followed as explained to you by your surgeon. It is very important not to feed your baby any food harder than puree foods, for the length of the recovery time (which is approx. 6 weeks).

Bone Graft

The bone graft operation is one that comes around 10/11/12 years of age. During this, the surgeon removes a section of bone, usually from the hip, and uses it in the jaw to patch the palate. This means that post-operation, you will need to look after both the mouth and hip. For children around this age, video games, movies and media are excellent tools to relieve boredom during recovery, and again we suggest following suggestions from your surgeon.

Cleft Treatment Timeline

Age Chart

Your Cleft Clinic

A Cleft Clinic is where all consultants and surgeons you’ll be working with, will be in one room to talk about the treatment plan for your child, which allows all the surgeons to talk to you about what is needed, and work together to give the very best outcome for your child.

Find your State Cleft Clinic

 

Your Cleft Specialists

Plastic Surgeon

After the birth of your child, the plastic surgeon will be one of the first specialist you meet as they have the most influence on your child’s treatment plan. Each of the plastic surgeons have undergone specialist training in cleft lip repairs, palate repair, bone graft, jaw realignment and other re constructive and cosmetic surgeries.

Ears Nose & Throat Specialist

ENT’s look after everything related to the ear, nose and throat. Cleft children will have regular hearing tests done by audiology to ensure their child hearing is where it needs to be. A common problem for all children can be the advent of “glue ear”. To fix this problem “grommets” are surgically implanted to help the ear do what it should. Quite ofter the ENT specialist will put in grommets during the lip or palate operation. The huge advantage of this is that the child does not need to undergo another separate surgery.

Orthodontist and/or Dentist

The orthodontist is initially seen soon after the birth for a baby plate or taping in preparation for lip repair surgery. These technique helps to give a better outcome when lip repair surgery occurs. Once the lip repair surgery has been completed you will generally only have check ups with the orthodontist but nothing major until around the time of your child’s bone graft. A bone graft is experienced by children with a cleft palate as there is a gap in the gum lining.

Speech Pathologist

Surprisingly this is the next specialist you will see on your journey. As part of their university degree is the anatomy and in particular the functions of the mouth. Their knowledge is extensive and valuable. Speech are able to assist with all feeding related problems you might experience in the early days. Once all the initial issues have been rectified families they will generally be seen again around the child’s first birthday to see if any speaking issues are prevalent. Cleft children may or may not experience delayed speech related issues. Many factors ultimately may be the cause for this which you won’t know until the time comes. Even the same type of clefts vary in degrees and therefore treatments.

Government Cleft Incentives

To assist affected families, the Australian Government issues incentives and concessions to help cleft affected families. However, certain conditions apply, which outlines that the patient must:

  • Be enrolled in Medicare
  • Before turning 22 years of age, be certified by a health professional as having a cleft lip, a cleft palate, or other eligible conditions
  • Have started treatment by an approved health professional before turning 22, and
  • Be under the age of 28 when receiving treatment

You can also apply for a health care card under the carers allowance. Apply as a carer, and while you will likely be told that you were unsuccessful in getting payments, your cleft child will still receive a health care card. However, you will need to get your GP to fill in part of the form. Click here for more information on the health care card.

For more information on the incentive scheme and what entitlements are granted, visit the Australian Government information page.