Your child has a cleft---what to expect from birth to adulthood:
Frequently, clefts are diagnosed on prenatal ultrasound. If this occurs, we will see you in the office before your baby is born to discuss everything that you should be prepared for. Ultrasounds are fairly accurate at detecting cleft lip, but not as sensitive at identifying cleft palate. Therefore, we often do not know exactly what to expect till your child is born. Sometimes a cleft is detected after birth, especially if the baby has an isolated cleft of the palate. This can be a shock for the parents. If your is baby is born with a cleft, it is important to know that your child will be ok. A cleft is not a dangerous condition, and you have every reason to believe that they will have an excellent life. However, the condition does pose some challenges. Treatment will involve multiple trips to specialists, and many surgeries by the time they reach adulthood. A cleft surgeon and cleft team is extremely important, because we help you navigate through the journey of your child’s life from birth to adulthood. Our team includes our craniofacial surgeons, speech pathologist, orthodontist, geneticist, and ENT specialist. As your child grows, all of these specialists will be important at different times. We work closely together to coordinate all of your different needs.
After birth, the first issue that tends to arise is feeding. Babies with cleft lip and an intact palate tend to do well. When babies have a cleft palate, however, feeding can initially be quite difficult. There is a connection between the nose and the mouth, so food often leaks out of the nose (which can be irritating) and the baby has trouble forming suction. As a result, most babies with a cleft palate are not able to breast feed, and will need to use a special bottle with special nipples to get enough nutrition. The cleft palate does not actually affect the baby’s ability to swallow. This can be a frustrating process, and will take some experimentation to find what works best for your baby. During this time, you will work closely with a speech therapist who is an expert in cleft feeding. We will then need to follow you very closely in the office to make sure that your baby is gaining weight appropriately.
Another decision that you will have to make early on, is whether or not to do NAM. “NAM” or “naso-alveolar molding”, is a process that helps align the bones of the cleft and shapes the tissue of the nose in preparation for cleft lip repair. It tends to make surgery easier, and improve the aesthetic results. If you decide to do NAM, we will work closely with you throughout the process, and may also involve an orthodontist. An appliance will be made for your child which looks similar to a retainer, but has an extension that fits into the nose. It is held in place with dental glue and tape. This will gradually stretch and mold the tissues. It needs to be frequently checked and adjusted. It will also require commitment from you as parents to place the appliance and clean it daily. It is still possible to obtain good surgical results for your child without NAM if you feel like the process is too overwhelming
It is common for babies with cleft palate to have problems with ear infections, because the same muscles that control the palate help remove fluid from the ear canal. In most cases, the ENT physician will recommend placing tubes in your child’s ear drums to help this fluid drain. This is usually done at the same time as the cleft lip repair or at the time of the palate repair so that your baby does not need to undergo a separate anesthesia.
If your baby has a cleft lip, you can expect that the first surgery will be a cleft lip repair at approximately 3 months of age. This surgery involves repairing the lip and trying to make the nose as symmetric as possible. If your child has a cleft palate, we also perform something called a “vomer flap”, which helps repair the very front part of the palate that is connected to the nose. We then let your child heal till they are 9-12 months of age, when they are ready for their palate repair. You should be aware that, as part of the normal healing process, the lip will begin to draw up or “contract” and look tight or even notched. This will go away as they scar gradually relaxes over time, but this process can sometimes take 1-2 years to be complete.
The next procedure to be performed will be a palatoplasty. There are two main reasons that we fix a cleft palate. The first is to re-create the natural barrier between the mouth and nose, so that food and drink do not leak into the nose when eating. The second, and most important reason, is for speech. The job of the palate is to act like a valve that prevents air from leaking into the nose while we speak. The muscles of the palate move it against the back of the throat and force air past the vocal chords and out of the mouth. If air leaks through the nose, speech sounds very “nasal” and can be difficult to understand. This is why we want to fix the palate before a child starts to form a significant vocabulary. Goals of surgery are to close the hole in the palate, as well as reposition the muscles in the appropriate place to make the palate function well. Palate surgery will not address any gaps that might be present in the gums. Most children do well, but in about 20% of cases a hole can form in the palate while it is healing. This is called a “fistula”, and would require another surgery later on to fix. After surgery, we have to wait several years for your child to form speech before we know if the operation has been successful. By the time your child is 3-4 years old, we have a fairly good idea of whether or not the palate is functioning well. 75 % of the time it is. In 25% of children, there is still some air that leaks out through the nose. Treatment will require speech therapy, but often requires further surgery on the palate as well.
Occasionally there may be some asymmetries of the lip or the nose that we may consider revising before school age. Otherwise, the next intervention generally will not be until your child is about 10 years old. Throughout this time, we will be following you at least yearly in our team to make sure that you are getting all the services that you need, and that there are no surprises. Additionally, your child will begin orthodontics. This may include special retainers and/or braces. The orthodontist will be keeping a very close eye on your child’s teeth, and will let us know when it looks like the permanent canine tooth is ready to come in. This usually happens around age 10, and means that it is time for your child’s alveolar bone graft or “ABG”.
The purpose of an ABG is to fix the hole in the gums and fill the gap with bone so that the canine tooth has something solid to erupt into. Otherwise the tooth will be lost. This will also close the remaining connection between the lip and nose, and should resolve any residual leaking of liquid or food that your child may be having. An ABG requires taking bone from the marrow of the hip. Occasionally the bone graft does not take, or does not make enough bone for the teeth, and the bone graft needs to be repeated. If this is the case, we tend to use a substance called BMP to encourage bone growth. After the bone graft, your child will need continued orthodontics.
Depending on how your child grows and develops, they may need additional surgery. Most cleft children will have some asymmetry of their nose that they would like fixed. This is done with a formal rhinoplasty or “nose job” once your child is a teenager, usually 16-18 years old. It is also common for the upper jaw of cleft children to have stunted growth compared to the lower jaw. As your child reaches puberty, this can lead to an “underbite” which can affect chewing, breathing, and appearance. Sometimes the problem is minor enough that it can be treated with orthodontics alone. If not, surgery on the jaws will be necessary once growth and puberty is complete. This may mean surgery on one or both jaws depending on the severity of the problem (see orthognathic surgery section).
We will continue to follow your child into adulthood for whatever problems or issues might arise.