min. read
Our multi-disciplinary team in North Austin is available to provide comprehensive care of your child who was born with a cleft.
If we meet them when they are a newborn, our team will help you with early care of your baby and our orthodontist can offer early molding of their cleft to make it easier to repair. If we first meet your child after they have already had their lip or palate repaired, our team are experts in any future surgeries they may need to improve both appearance and function. Our team enjoys working alongside children with clefts from infancy to early adulthood. We have the team and resources to meet all of their needs.
A cleft lip and/or cleft palate happens when a child’s upper lip, upper gums and palate (roof of the mouth) don't form correctly in the womb. It is one of the more common birth conditions in the United States. About 1 out of every 1,600 babies in the United States are born with a cleft.
A cleft lip and/or palate may or may not be diagnosed before your child is born. If it is diagnosed before your child is born, it is helpful to meet with a cleft team before birth to prepare for your child. If it is not diagnosed before your child is born, that is OK! In that case, it is important to meet with a cleft team within 1 week of your child’s birth to make sure your child is getting everything they need. In particular, it is important to make sure they are feeding well.
We do not yet fully know why clefts occur. Sometimes, a cleft may be related to a genetic condition (known as a syndrome). However, most of the time, a cleft is not related to a genetic condition. Sometimes, having a family member with a cleft can increase the chances of your child being born with a cleft.
Your cleft team will help figure out whether genetic counseling and testing are necessary.
The easiest way to think of a cleft is to divide it into 3 parts. A child with a cleft can have any combination of these 3 parts (Figure 1):
- Lip and nose: This is the most visible, outside part of the cleft.
- Gum or alveolus: This is the part of the cleft that affects the bone and gums of the upper jaw.
- Palate: This is the roof of the mouth. When discussing cleft palate, you may hear about the hard palate and the soft palate. The hard palate is the front part of the palate, which has bone in it. The soft palate is the back part of the palate, which does not have bone in it.
Figure 1: Types of clefts
- No cleft
- Left cleft lip
- Cleft of the soft palate
- Cleft of the soft and hard palate
- Left unilateral cleft lip and palate
- Bilateral cleft lip and palate
Clefts can occur on one side (unilateral) or both sides (bilateral). They may be complete (involving the entire distance from the lip to the nose) or incomplete (involving a portion of the lip only) (Figure 2)
The most common cleft is a left complete cleft lip and palate. This type of cleft involves all three parts discussed above (lip and nose, alveolus and palate).
Figure 2: Types of cleft lip and palate
- Left incomplete cleft lip and alveolus
- Left complete cleft lip and palate
- Bilateral complete cleft lip and palate
- Feeding difficulties: The first priority in babies with clefts, especially those with cleft palate, is making sure they are getting the nutrition that they need. It is important to see the cleft team within a week of your baby’s birth to make sure they are feeding enough. Babies with cleft palate are usually unable to feed from a regular bottle or breastfeed because it is hard for them to suck. The team will usually recommend special bottles to help your baby feed better. Babies with cleft lip (without cleft palate) are usually able to feed without special modifications.
- Congestion: Babies with cleft palate may sound congested all the time due to milk getting into their nasal canals. Nasal saline or salt water nose drops and suction can be used to help clear the congestion.
- Ear infections and hearing loss: Children with clefts are more likely to develop ear infections. Many children with clefts eventually need ear tubes. It is important to follow with the Otolaryngology team to make sure your child’s hearing is adequate
- Reflux: Gastroesophageal reflux is more common with cleft palate. Keeping your child at an incline during feeding, burping frequently and keeping them at a slight incline for 30-40 minutes after the feeding can help prevent reflux. If your baby continues to have large amounts of spit-up or vomiting that occurs after most feedings, seems irritable during the feedings and has trouble gaining weight, reflux medication may be prescribed.
- Gas: Increased gas is common in babies with cleft palate. Babies with cleft palate tend to swallow more air with feedings. Frequent burping during feedings can help, as well as over the counter gas drops like simethicone.
- Speech and language delays: Children with clefts may have difficulty pronouncing certain words or making certain sounds. This can happen in any child with a cleft but is more likely if there is a cleft palate. It is important to work closely with the speech-language pathologist to detect speech problems and start speech therapy when they recommend it.
- Dental issues: Children with clefts may have missing, extra or abnormal teeth. It is important to maintain great hygiene and follow closely with your child’s dentist. In addition, children with a cleft may develop crowding and abnormal jaw position. In those cases, the orthodontist can help move the teeth into a better position, and the plastic surgeon may recommend jaw surgery when your child is done growing.
Babies with a cleft palate usually have difficulty feeding with a regular bottle. As a result, they usually need a specialty bottle.
In addition, babies with a cleft palate usually have difficulty getting enough nutrition through breastfeeding, and require feeding with a specialty bottle. Nevertheless, they still benefit from breastfeeding for bonding and comfort.
Children with clefts may develop speech differently. This varies from child to child, and also varies depending on the type of cleft
Cleft lip only
If your child’s cleft is limited to their lip, speech will likely develop normally, although sometimes there are distortions on sounds produced with the tongue right behind the teeth, like /t/ or /s/.
Cleft palate with or without cleft lip
Children with cleft palate are more likely to have speech difficulties. Some of those difficulties may result in air leaking from the mouth into the nose during speech. This is known as velopharyngeal insufficiency (Vee-Low-Fa-Rin-Gee-El In-Suff-E-Shin-See). In this condition, the palate is not able to fully touch the pharynx (back of the throat) during speech (Figure 3). Children with VPI may have difficulty pronouncing sounds like ‘b’, ‘d’, ‘f’, ‘k’, ‘p’, ‘s’ and ‘t’, and these sounds may come out muffled, or they may sound like ‘m’ or ‘n’.
At Texas Children’s, we repair the cleft palate before most children begin using words meaningfully, which helps them learn to say their sounds correctly. Annual speech evaluations are recommended with a speech-language pathologist affiliated with the Cleft Palate Team until your child shows normal speech. If your child has a cleft palate, we will see them for their first speech-language evaluation several months after their palate has been repaired. During that visit, we monitor language development and listen closely to how your child produces sounds. Speech therapy may be recommended if your child’s speech and language skills are delayed. Some families will choose to come to speech therapy at Texas Children’s, while other families may prefer to be seen for therapy closer to their home. If speech therapy is desired closer to home, our speech-language pathologists can work closely with your treating speech-language pathologists to ensure your child’s speech develops appropriately. Our goal is that your child will enter school with speech that is as close to normal as possible. Importantly, not all children with clefts will require speech therapy to learn speech normally.
Image
Figure 3: Velopharyngeal insufficiency
- Speech with normal palate function. During speech, the soft palate can touch the back of the throat, allowing the air to go into the mouth and allowing air pressure to build up in the mouth
- Speech with velopharyngeal insufficiency. The palate is unable to touch the back of the throat during speech. Therefore, air rushes into both the mouth and the nose during speech, and the child is unable to build up adequate air pressure inside their mouth
The following is a simplified timeline and description of the most common surgeries that children with cleft might need. Not every child will require all these surgeries. On the other hand, some children might require more procedures than what is outlined here.
Major procedure details:
- Nasoalveolar molding (NAM)
- Cleft lip adhesion
- Cleft lip repair
- Cleft palate repair
- Alveolar bone graft (ABG)
- Orthognathic surgery
Other procedures: Sometimes, children with clefts may need other surgeries in addition to the ones listed above. The most common other surgeries are:
- Ear tubes (also known as tympanostomy or myringotomy tubes): These are small tubes that the ENT inserts through your child’s eardrum to allow fluid to drain and to decrease the risk of ear infections.
- Cleft lip and nose revision: Sometimes the cleft lip and nose repair needs a touch-up as your child grows, and a revision can help improve the scar and the shape of the nose and lip.
- Sphincter pharyngoplasty and posterior pharyngeal flap: Sometimes, a child with a history of cleft palate repair continues to leak air through their nose when they speak (hypernasality). Your plastic surgeon, in conjunction with the speech-language pathologist, may recommend one of these surgeries to help improve your child’s hypernasality.
- Rhinoplasty: This is often the last surgery that children with cleft lip and palate get. It helps improve the shape of the nose. It may also be combined with a septoplasty, if needed, to address a deviated septum.
Your child’s care team is made up of many specialists who may care for your child over time. Your child may not see every specialist listed below, but it’s important to know who you may come across during your child’s treatment.
Craniofacial Plastic Surgery
The plastic surgery team consists of Plastic Surgeons and Plastic Surgery Advanced Practice Providers (APPs). The plastic surgery team leads and coordinates your child’s treatment and communicates with all the other specialists to make sure your child is getting the best care possible. The plastic surgery team performs many of your child’s surgeries, including cleft repair, bone grafting, jaw surgery, and others.
Nutrition and Feeding
Many children with clefts, especially those with a cleft palate, have difficulty feeding early in life. They require extra attention, and special bottles and feeding techniques. The nutrition team works with the speech-language pathology team to assess your child’s feeding needs and provide resources to make their feeding as efficient and pleasant as possible.
ENT (Ear, Nose and Throat)
The ENT provider, also known as otolaryngologist, takes care of your child’s ears and airway. They check your child’s hearing, and may perform surgery on your child’s ears, tonsils or adenoids.
Speech-Language Pathology
A Speech-Language Pathologist (SLP) specializes in helping children speak and form words. During infancy, they help your child feed efficiently by recommending bottles or feeding positions. As your child grows, they assess your child’s speech and language skills, and help develop treatment and therapy plans. The Texas Children’s SLP will work closely with your surgeons and orthodontists, as well as your local SLP, to ensure your child develops speech normally.
Orthodontics
The orthodontic team specializes in your child’s teeth and gums. There are several periods in your child’s life when they will likely come into contact with the orthodontic team, if needed: early in life for nasoalveolar molding, before and after bone grafting, and before and after jaw surgery. While the actual orthodontic treatment may be done by an orthodontist closer to home, the Texas Children’s orthodontic team helps coordinate your child’s dental care to make sure they are getting what they need.
Pediatric Dentistry
Children with clefts often have missing, extra or abnormal teeth. It is essential to work closely with your child’s dentist, and to supervise your child’s brushing and flossing, to make sure your child’s teeth are as healthy and clean as possible.
Psychology
Having a child with a cleft can be stressful and usually requires many doctor visits. For your child, it is important that they feel confident and proud of who they are. The psychology team can help assess any stressors that your family may be encountering and can help provide resources to address those stressors.
Social Work
A social worker helps you navigate the healthcare system as an advocate, provides emotional support, and guides you towards community, lodging and transportation resources.
Genetics
Some clefts (but not all) may be due to a genetic condition. In those cases, it is important to diagnose that genetic condition to make sure your child is healthy from head to toe. A genetic counselor can help assess your child and investigate whether their cleft is due to a genetic condition.
Pulmonology
Babies who have Pierre-Robin Sequence may have a type of airway obstruction known as obstructive sleep apnea. The care of these babies usually requires close collaboration between the craniofacial surgeon and the sleep pulmonologist. The degree of sleep apnea is usually measured using a sleep study (polysomnogram).
75831
Conditions
article