Complete clefts of the lip and palate usually require some adjustment of the original repair. Future surgery may be needed for other reasons. A small hole (fistula) may remain in the palate after the original repair, and may need to be closed if it affects speech or lets food or drink run down the nose. A dental plate may be fitted to cover the hole. Around one in five children with a repaired cleft palate may need further surgery to improve speech (Pharyngoplasty).
In other cases, the repair may degrade as the child grows. The nose tip may distort and the child may find it difficult to breath although the nose, particularly on the cleft side. It may be possible to improve the shape of the lip and nose and the look of the scar. It may not have been possible for the surgeon to make as good a repair as desired the first time, because the cleft severe.
The age for such procedure varies considerable and depends on the assessment of the cleft team. Not all problems can be corrected by surgery. The side-effects of treatment may outweigh the benefits. The decision about further surgery must include the views of the parents and, of course, the child.
Your child is very likely to suffer hearing loss because of the cleft palate. This is nearly always due to fluid in the middle ear (glue ear) and may correct itself as the child grows up. Rarely the inner ear is not fully developed as the baby grows during pregnancy. In this case the loss of hearing may be permanent, and may be more severe is accompanies by ‘glue ear’. Your specialist nurse and health visitor will closely monitor your baby’s responses to sound and talk to your cleft surgeon if it is suspected there is hearing problem, this may be confirmed by the otologist or audiologist. Regular hearing tests will be arranged by an otologist, who may treat him / her with medicine or propose an operation to insert a small tube (grommet) to allow air to enter the middle ear. Rarely, a hearing aid may also be considered.
Any hearing loss which is severe enough to affect your baby’s language development must be discovered as soon as possible, and steps taken to overcome the loss. Regular hearing tests (performed by playing special games) will be arranged for your baby from age 5-6 months and probably into their teens. Be sure that you are consulted about the best way to treat your baby’s hearing difficulties. If you are concerned about your baby’s hearing ask to be referred to audiologist. Temporary deafness is possible and the grommet operation may not be necessary. However, the otologist may recommend surgery for a reason other than hearing loss. Make sure your are satisfied with the explanation for this. If a grommet operation is necessary, ask if this can be combined with any other operation you baby may need. Your audiologist may wish to contact the local education services so that your child can be monitored in school, and given extra support if necessary.
Caring For Your Child’s Teeth
You must protect your child from tooth decay and gum disease. As your child may have some poorly formed teeth, the rest must be kept in very good condition, as future treatment may be needed to straighten them. You should start to brush the teeth as soon as they appear. Use a small soft toothbrush with fluoride toothpaste. Depending on your local water supply, you may need an extra fluoride supplement in the form of drops or tablets. Ask your own dentist. Your own dentist should be able to do any filling required. If not, then the cleft team dentist will advice. If teeth need to be removed, ask your dentist to discuss this with the team orthodontist first. The main role of the orthodontist is to correct the position of the teeth, not to provide routine dental care. From the first signs of teeth appearing. Register your child at birth with your own dentist. Limit the amount of sugar your child eats. Sweets, sugary drinks and biscuits should be avoided particularly between meals. If your child is on long-term medication ask for a sugar-free variety. Thumb sucking is a normal comfort habit, which is not a problem for children with clefts.
Correcting The Position Of The Teeth
The cleft of the lip may result in a gap in the gum and bone of the jaw, beneath the upper lip where the teeth develop. This can lead to some front teeth coming into the mouth twisted and in the wrong position. On either side of the gap in the jaw a tooth may be missing or a small extra one may form.
When there is a repaired cleft palate the upper jaw and arch of teeth may become too narrow. This is especially likely in a complete cleft. As a result, some upper teeth may fit inside the lower ones – called a ‘crossbite’. Over time the upper jaw may not grow forward as well as the lower jaw, and so crossbite of the front teeth becomes more common.
The orthodontist will usually take impressions of the teeth to make plaster models that are used as a record, to plan treatment, and to help construct appliances of braces. X-rays are generally required too as these give information about the jawbones and the position of the teeth that will have to come through. Teeth move into position gradually as gentle pressure is applied by the braces. Small metal brackets are attached to the teeth by means of a special plastic glue or bands cemented to the back teeth. These brackets are joined by wires or elastics that guide the teeth into position. Some can be taken out for cleaning.
Crossbites and other irregular teeth are noticeable as soon as they come through in the baby’s mouth. However, orthodontic treatment is not normally recommended for baby teeth. This s because it is difficult for a baby to tolerate and provides no lasting benefit. Treatment is best given for the second set of teeth around 8-9 years old if they interfere with the bite or are difficult to clean. A bone grafting operation may be necessary to provide bone as a base for new teeth to grow if the original cleft has involved the jaw bone beneath the lip cleft. This is usually done when the child is around 8-10 years old, before the permanent canine teeth come through. If its necessary, the upper arch of the teeth is widened before bone grafting and some straightening of the front teeth can be combined with this, taking 6 –12 months. The same appliance is usually left in place for 3 months while the bone graft is healing. The main treatment for children with clefts is provided around age 11- 12.
You should decide with your orthodontic how much of this treatment your child should have. Ask to see examples of treatment and typical appliances. The main reasons for offering it are to improve appearance and to make the teeth easier to clean. Teeth do not have to be perfectly straight to look acceptable or remain healthy. If you are un happy with the way your child’s permanent front teeth are coming through an earlier start to treatment may be possible. Wearing any form of appliance calls for extra teeth brushing to avoid tooth decay and gum problems. Younger children may need help. In the first few days after the appliance is fitted the teeth may be little tender.
Monitoring Speech And Language
In order to speak correctly there must be a good seal between the mouth and the nasal passage. This is ensured by the movement of the soft palate at the back of the mouth and the movement of the walls of the throat. Babies born with a cleft palate, with or without a cleft lip, may have speech problems. There is difficulty in making the proper sound of the consonants (such as ‘p’,’b’,’t’,’d’,’s’,’ch’), and /or a nasal sound to the voice due to air escaping down the nose. These children should be routinely checked by a speech and language therapist, who will help you child speak as well as possible. This starts with monitoring your baby’s first sounds and words and the understanding of what is said. The therapist designs a special program of activities appropriate to the age and development of the child.
If there is a ‘nasal’ sound to your child’s voice, the therapist may use special computer equipment, or a mirror under the nose to monitor the air passages as your child speaks. Often a tape recorder or video is used. There are methods to examine the way the soft palate and sidewalls of the throat move during speech. One is moving X-ray called fluoroscopy. A second method called nasopharyngoscopy involved lightly anaesthetizing one side of the nose. The doctor gently passes a thin fibreoptic telescope to a position above the palate and observe and records the palate and sidewalls of the throat as they move during speech. You and your child may be able to watch what is happening inside the mouth on the television during these tests. Once the surgeon understands the nature of the problem, he/she may then choose to do an operation (called a pharyngoplasty). This is to remove the nasal sound from your child’s voice and make the child speech stronger and clearer by stopping too much air escaping down the nose.
You are seen by the team’s therapist at the clinic. When regular speech therapy is required this will be arranged with the local therapist at your health center. You will usually meet the speech and language therapist during your first clinic visit, but definitely by the time your baby’s palate has been repaired. Therapy may continue into school age.
If you have not met your therapist by the time of the palate repair, ask to be referred. Know their name and phone number. During the clinic sessions, it may appear that the therapist is ‘just playing’ with your child, but this is the way of monitoring progress. Moreover, you should be involved in the process of helping your child, joining in with the therapist, and carrying-out activities give to you to do at home. As services tend be oversubscribed, tell the cleft team if you need that your child is receiving insufficient therapy. If a second operation is proposed, be sure this is done after video fluoroscopy and nasopharyngoscopy. Beware of agreeing to an operation if neither investigation has taken place, and make sure that the possible side effects are explained. Also be aware that there are causes of speech problems other than a cleft.
What The Future May Hold?
The child psychologist or specialist nurse counselor helps you adjust to the cleft, to the reactions of others and to help cope with the treatment. You may find it hard to take your new baby out because of stranger’s reactions. As your baby grows up, he /she is likely to ask about the cleft. Be matter of fact about giving information to avoid giving the feeling that the condition is something to hide. Explaining the cleft in simple terms can help your child understand any convey this to friends. Early photographs may help with this.
Investigating The Genetic Link
There can be a family link (heredity), but in most cases a child with a cleft will be born without any known previous history. Sometimes cleft is linked with other conditions. You will be offered the opportunity to talk to a clinical geneticist or counselor, who can help families understand why they had a child with a cleft. He /she will ask questions about other members of your family, and even ask to examine them to look for minor signs of cleft or related characteristics. You will be asked about your pregnancy and your child’s health and progress. Your child will be examined and a blood test taken to look at your child’s chromosome pattern. Ask if you wish to be involved in researching the genetic link.
The severity of the cleft and sex of the child (more baby boys are born with clefts) will give some indication of the possibility of any family member giving birth to a child with a cleft (or the child’s own future family being affected). Cleft lip and palate is also more likely to recur than cleft palate alone. The geneticist will also offer prenatal testing in the case of future pregnancy. Counseling will be given to help you decide whether you wish to become pregnant again.