Updates

Cleft Lip and Palate at North Austin Campus

Conditions

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At Texas Children’s North Austin Campus, we have a specialized multi-disciplinary team dedicated to care for your child born with a cleft. We take pride in our ability to offer the highest level of all cleft care from birth to maturity. Our team works together on a daily basis in the same clinic space to ensure all aspects of your child’s care are considered. We are available to see you for a pre-natal visit and fully prepare you for your baby’s birth, to see your newborn and start them on a thoughtful and successful treatment path, or to meet your older child or young adult born with a cleft and help them transition care to our team. 

  • A cleft lip occurs when one or both sides of a baby’s upper lip and upper gum do not come together in the womb, leaving a gap in the skin, muscle and bone. 
  • Cleft lip 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) 
  • Most complete cleft lips, and some incomplete cleft lips, will also have bone missing in the gum line under the cleft. This is called an alveolar cleft 
  • A cleft lip can occur by itself or with a cleft palate
  • The most common cleft lip type is a left complete cleft lip and palate
  • The cleft lip repair is usually done between 3 and 6 months of age
  • The nasal asymmetry and cleft width can be improved before surgery using nasoalveolar molding (NAM)

Types of Cleft Lip a) Unilateral Incomplete b) Unilateral Complete c) Bilateral complete

  • A cleft palate occurs when one or both sides of a baby’s roof of the mouth (palate) do not come together in the womb, leaving a gap in the lining and muscle between the nose and mouth.
  • When a baby has a cleft palate alone, the gap starts behind the gum line (alveolus)
  • When a baby has a cleft lip and palate together, the gap in the roof of the mouth continues past the gums and into the cleft lip.
  • A cleft palate can also be unilateral (one side) or bilateral (both sides), but the surgery to repair it is the same.
  • A cleft palate affects the muscles of speech at the back of the palate.
  • A baby born with a cleft palate may have decreased growth of their upper jaw over time. This can lead to class 3 malocclusion (“underbite”) and may require orthognathic (jaw) surgery when they are fully-grown.
  • We usually do a cleft palate repair between 10 and 12 months of age. 

View inside the mouth: 1. Palate without a cleft, 2. Cleft lip without a cleft palate, 3. Cleft of the soft palate alone, 4. Cleft palate with no cleft lip, 5. Complete unilateral cleft lip and palate, 6. Complete bilateral cleft lip and palate.

  • Cleft lip and palate is one of the more common birth conditions in the United States. About 1 in every 1,500 babies in the United States are born with a cleft lip with or without a cleft palate, and 1 in 2000 are born with just a cleft palate.
  • We do not yet fully understand why clefts occur. Two-thirds of clefts are not linked to anything that could have happened during or after you were pregnant. 
  • Having an immediate family member with a cleft slightly increases the chances of a new baby in the family being born with a cleft.
  • Sometimes, a baby with a cleft has a genetic condition (known as a syndrome). Examples of these are Pierre Robin sequence and Treacher Collins syndrome.
  • Our team will help you decide whether genetic counseling and testing will be helpful.
  • If you learn that your baby has a cleft lip or palate on a pre-natal ultrasound, we are happy to meet with you for a pre-natal visit to discuss the condition. We find that once parents learn about what we can do for cleft lip and palate, they feel more prepared and comfortable with how to care for their baby after birth.
  • We would like to meet with you and your baby within 1 week of birth to make sure they are doing well and to plan for their first year of treatment. There are special considerations when feeding a baby with a cleft that we can teach you, and there are other conditions we can check for that can happen along with a cleft. 
  1. 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.
  2. 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. 
  3. 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
  4. 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.
  5. 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.
  6. 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 North Austin our craniofacial orthodontist and pediatric dentist will evaluate your child follow them through the different stages of tooth development. 

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. 

View our teams in Austin

The plastic surgery team consists of Plastic Surgeons, Nurses, Care Navigators, and Surgical Hospitalists. The plastic surgery team leads and coordinates your child’s surgical 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 lip repair, cleft palate repair, alveolar bone grafting, rhinoplasty, and jaw surgery.

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. Our 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.

The ENT provider, also known as an otolaryngologist, takes care of your child’s ears, hearing, and airway. Our specialized team can check your child’s hearing, and perform surgery on your child’s ears, tonsils or adenoids if needed.

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 speech therapist, to optimize your child’s speech communication. 

The orthodontic team specializes in your child’s teeth and gums. There are several periods in your child’s life when they may need orthodontic treatment: early in life for nasoalveolar molding, before and after bone grafting, and before and after jaw surgery.

Children with clefts often have missing, extra or abnormal teeth and are more likely to get cavities than other kids their age. It is important that you work closely with your local dentist, and supervise your child’s brushing and flossing each day. Our team pediatric dentist will meet with your child as they grow up to make sure their teeth are as healthy as possible.

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. Our team psychologist can meet with you and your child to discuss:

  • Difficulty with adjusting to the cleft diagnosis
  • Stress management in the context of cleft-related symptoms 
  • Mental health concerns and bullying related to the cleft condition
  • Difficulties following the cleft treatment plan

Our Texas Children’s social worker can help you navigate the healthcare system as an advocate, provides emotional support, and guide you towards community, lodging and transportation resources.

  • Our Child Life team works with children who experience high anxiety when facing surgery and hospital visits. 

Some clefts 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. 

Babies who have Pierre-Robin Sequence and a cleft palate 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. 

 

Our surgeons are experienced in all surgical procedures related to cleft care, from when your child is an infant, to when they are a teenager and ready to graduate from our care. Some children may only require one surgery in infancy to meet their needs, whereas children with other types of clefts may need a series of timed surgeries over their childhood. 

In North Austin, we are dedicated to ensuring each surgery achieves the maximum benefit to decrease the number of total surgeries needed. The timeline below shows some procedures your child may need:

We call the procedures above “primary surgeries” since they directly treat the changes in anatomy caused by the cleft. Occasionally we need to perform “secondary surgeries” that improve upon the result from the primary surgeries. Examples of these are:

  • Cleft lip and nose revision: If the cleft lip and nose repair needs a touch-up as your child grows, a revision can help improve the scar and the shape of the nose and lip. This is usually a short day surgery procedure done as they prepare to enter grade school. 
  • Secondary Speech Surgery: A small number of children can still have some nasal air escape when they speak after a primary cleft palate repair. Our speech language pathologist will check for this when your child is 3-4 years old and saying sentences. If the air escape is because the palate is not reaching the back of the throat during certain sounds, they may recommend surgery on the soft part of the palate of back of the throat to treat the air escape.