Because most orofacial clefts cause a wide range of complications, both structural and developmental, families usually require a team of specialized practitioners.
Working together closely, this team can address aesthetic and functional concerns, as well as employ ongoing therapies to tackle issues with speech, hearing and social situations as your child grows.
How your team decides to treat your child is individual and unique. No two children receive the same recommendations, and you’ll need to work together with your physicians and therapists to develop the best plan for your baby.
Surgeries To Restore Function & Appearance
First, orofacial clefts must be surgically repaired. While the procedures performed to reconstruct lips and palates are usually termed “plastic surgery,” achieving an aesthetically “normal” look is not the primary concern. Instead, plastic surgeons are attempting to reach a point at which your child’s mouth is able to perform all of its necessary duties.
Feeding, breathing and speech can all be inhibited by an orofacial cleft. In order for children to grow healthy and happy, they must be able to do all of these things.
Repairing A Cleft Lip
Cleft lips are generally repaired through a surgical procedure that occurs within the first 12 weeks of life. Your newborn will be put under general anesthesia, completely asleep and unable to feel pain. Then the surgeon will snip the tissues and sew the lip closed.
In general, the amount of scarring that occurs depends on how large the stitches are. Small stitches will result in the least noticeable scarring.
Repairing A Cleft Palate
Cleft palates are repaired a little later, within the first 18 months is recommended. Some specialists, including researchers at the American Cleft Palate / Craniofacial Association, advocate for surgical intervention when a baby is younger than 12 months, before speech development has begun.
If both the soft and hard palate are cleft, your surgeons may decide to repair one before the other. Usually, the soft palate is sewn together first. Between procedures, your child may wear a “palatal obturator,” a dental prosthetic that covers the opening in the hard palate, allowing for easier speech and feeding.
There are many different techniques surgeons use to repair cleft palates, and the right one in your child’s case will depend on the extent and shape of the cleft, as well as your surgeon’s experience with various methods. In all of these cases, the goal is the same: to adequately separate the mouth cavity from the nasal passages.
For an overview of these techniques, click here.
After initial repairs, it’s likely that your child will require multiple surgeries throughout childhood and adolescence.
Many children with cleft palates will need to have “grommets” implanted. These small tubes fit inside the ear and help it drain fluids, decreasing the risk of developing an ear infection. Grommets aren’t permanent, and the eardrum actually pushes them out after around six months. Ear tubes are usually placed during a child’s initial surgery.
A form of rhinoplasty, or nose surgery, can repair openings in the base of your child’s nostril if their cleft lip is “complete.” This procedure is performed as late as the teenage years.
If your child’s cleft palate continues to affect speech development after initial surgery, an additional procedure may be required.
If the cleft extends to affect your child’s gums, an oral surgeon can repair it to allow for uninhibited tooth growth. This surgery is usually performed between 7 and 9 years.
Some isolated cleft palates can be successfully treated in only one surgery.
Members Of Your Team
In addition to the plastic surgeons who initially repair your child’s cleft palate and / or lip, and a pediatrician who can monitor your child’s overall health, you may need to work with a number of other specialists:
Dieticians & Nutritionists
Because feeding is often difficult for children with orofacial clefts, you may need to consult a dietician, who can make sure that your child is receiving the nutrients he or she needs.
Orofacial clefts can impede gum and jaw growth, or cause these structures to develop abnormally. An oral surgeon can reconstruct your child’s oral structures to allow for proper tooth growth.
Your child may require various dental prostheses to facilitate breathing, speaking and feeding. Along with pediatric dentists, a prosthodontist will be able to design medical devices to cover a cleft before surgical repairs.
Orthodontists can help your child’s teeth grow properly and guide correct jaw alignment.
Ear, nose and throat doctors are usually needed to help children with cleft palates. Because the palate provides a barrier between the mouth and nasal passages, a split in the palate can have wide-reaching consequences for sinus health.
Speech-language pathologists help patients overcome difficulties in communication and swallowing. Children born with orofacial clefts often have trouble producing certain speech sounds and regulating airflow during talking. Swallowing can also be affected by a cleft palate, and a speech-language pathologist can help monitor your child’s abilities during infancy.
At an increased risk of ear infections, children with cleft palates may require audiologists, who specialize in the treatment of hearing and balance problems.
Most children with orofacial clefts receive genetic screenings at some point. A genetic counselor can help families identify the presence of a genetic syndrome if one exists, and predict the potential of having another child with the same syndrome in the future.
Social Workers & Psychologists
Mental health, as well as social adjustment, should never be neglected. While most children with orofacial anomalies are faced with little to no social stigmatization, some are. Children can be teased for looking “different,” or fear such taunting. The prospect of impending surgeries can also be a source of anxiety.
Parents often require occasional therapy, as well. Adjusting to the reality of your child’s condition can be difficult, but with an experienced team at your side the obstacles are far from insurmountable.
How Much Does Treating An Orofacial Cleft Cost?
In 1994, a group of pediatricians from the University of Utah and University of California, Davis estimated the lifetime costs of several specific birth defects. The average for a person born with cleft lip and palate came to $100,000.
In 2015 dollars, that would equal $157,697.
In 15 states, there are laws that require health insurance companies to cover most, if not all, treatments needed by children born with orofacial clefts. For more information, including tips on appealing a claim denial, click here.