This post is sponsored by Lurie Children’s Hospital, but all of the opinions within are those of The Everymom editorial board.
"Becoming a parent is a unique journey filled with surprises and challenges you may never have expected. It leaves many of us wondering how none of this comes with some sort of instruction manual. But the fact is that every child is vastly different, and there is no one-size-fits-all for parenting. That’s especially true when your little one faces health issues that you have minimal experience with, including chronic conditions that require surgery, like cleft lip and cleft palate.
If your child has been diagnosed with cleft lip and/or cleft palate and is undergoing medical treatment soon, it’s natural to feel totally overwhelmed by it all. To help you navigate your child’s next steps, we’ve built a resource to answer all your questions with our long-standing partners at Ann & Robert H. Lurie Children’s Hospital of Chicago. We asked their experts in pediatric plastic and reconstructive surgery to share everything you need to know about a cleft lip and/or cleft palate diagnosis and treatment.
Meet the Expert
Arun Gosain, MD
Division Head, Plastic Surgery; Children’s Service Board Chair in Pediatric Plastic and Reconstructive Surgery
Meet the Expert
Noopur Gangopadhyay, MD
Attending Physician, Plastic & Reconstructive Surgery; Member, Lurie Children’s Surgical Foundation; Associate Professor of Plastic Surgery
What is the difference between cleft lip and/or cleft palate?
While our babies are growing in utero, the tissues surrounding the face and mouth should fuse in a way that results in the normal appearance and function of the mouth. The differences between cleft lip and cleft palate have to do with where the cleft (split) occurs.
Cleft lip is formed in the upper lip as either a small gap or dent in the lip and, in some cases, can continue into the nose. Cleft palate is a condition in which the two halves of the palate (roof of the mouth) don’t join in the midline. This can involve muscle or part of the bone. Since an infant’s lips and the palate develop separately, it is possible for a child to be born with a cleft lip only, cleft palate only, or both. This can occur on one side of the mouth (known as unilateral clefting) or on both sides (known as bilateral clefting). To break it down more, these conditions can be categorized into three general categories:
- Cleft lip without a cleft palate (isolated cleft lip)
- Cleft palate without a cleft lip (isolated cleft palate)
- Both cleft lip and cleft palate
Are cleft lip and cleft palate genetic?
In many babies, it is impossible to pinpoint a cause of cleft lip and/or cleft palate. The best available research shows it is likely a result of genetic and environmental factors. Genes that result in cleft lip and palate can be passed on by themselves or as part of a genetic syndrome. If there is a genetic predisposition to cleft lip and palate, there is usually a history of clefting in the immediate family. A family history of cleft lip and cleft palate, as well as some medications during pregnancy, are among the factors that can increase the risk of the condition.
If no other members of the family have had these conditions, the recurrence rate for future children with cleft lip or cleft palate is fairly low. If your child has an isolated cleft palate, the chances of recurrence are approximately 2 percent, and if they have a cleft lip without a cleft palate, the chances are 4 percent.
What is the treatment process?
If a diagnosis is made before birth through ultrasound, physicians will explain what to expect when the baby is born and how the condition is correctable. Often you can have a consultation with a pediatric plastic surgeon before birth. Typically, a cleft lip is repaired surgically when a baby is between 3 and 6 months old, while a cleft palate is repaired at 10 to 12 months of age.
In all cleft lip and palate procedures, the Lurie Children’s plastic and reconstructive surgery team is committed to restoring the lip and palate to its typical appearance and function. Following surgery, providers, including specialists in ear, nose, and throat, audiology, orthodontics, speech therapy, psychology, social work, and dentistry, will follow your child throughout their facial development from birth into the teenage years. After the second year of life, your child will have annual visits to the cleft team clinic.
Lurie Children’s recommends that all children with cleft lip and/or palate should be followed by a team certified by the American Cleft Palate-Craniofacial Association (ACPA). ACPA has recognized Lurie Children’s Cleft Lip and Palate/Craniofacial Team as an ACPA Approved Team.
What experts want you to know about surgery:
Cleft lip
The severity of a child’s cleft lip has a direct effect on their treatment plan. Cleft lip surgery is performed under general anesthesia and typically takes between three to four hours. If a child has a very wide opening, they may require an orthodontic appliance before and after the lip repair surgery to help align the lip and nose. They also may require a temporary procedure ahead of the formal repair to bring parts of the lip closer together.
The goal of the surgery is to bring together the separation in the lip so that the lips appear and function as normally as possible. Often the nose will be addressed during the same operation. Incisions are made on both sides of the cleft to create flaps of tissue that are then drawn together and stitched to close the opening.
Cleft palate
Cleft palate surgery is also performed under general anesthesia and may take three to four hours. In a cleft palate surgery, the plastic surgeon carefully puts the tissue and muscles in a better position so that the opening between the nose and mouth is closed and the roof of the mouth is rebuilt. Incisions are made on both sides of the opening, and specialized flap techniques are used to reposition the muscles and the palate. The repair is then stitched closed, usually in the middle of the roof of the mouth, so that typical feeding and speech development can occur and growth can continue throughout the child’s life.
Parents may be anxious about whether the surgery will be successful in fully closing the cleft and achieving a functional and favorable cosmetic outcome. Lurie Children’s is home to some of the most highly skilled pediatric plastic and reconstructive surgeons in the world. They not only routinely repair cleft lips and palates, but they also teach medical students and train surgeons around the world in perfecting these procedures. TLDR: You’re in great hands.
What are the risks of surgery?
As with all childhood surgeries, being informed about every possible outcome is important for parents to consider. Like all surgical procedures, risks of cleft lip and palate repair include pain, bleeding, infections, and reactions to anesthesia. Irregular scar healing, the need for additional surgery, and speech problems can also result from surgery. While all of these risks are serious and important to consider, it is also important to note that these outcomes are rare, and your pediatric surgical team is equipped to handle these scenarios.
Anesthesia-related risks
As with any surgery, anesthesia carries some inherent risks. At Lurie Children’s, anesthesiologists trained in pediatrics ensure the safest possible conditions for patients in the operating room. In some cases, a patient and their family will meet with an anesthesiologist in a consultation prior to the procedure. For additional information about pediatric anesthesia, check out this helpful guide where Lurie Children’s anesthesiologists answer more commonly asked questions.
Are revisions common?
Occasionally, children may need revisions for cleft lip and/or palate repairs, which can happen if the initial surgery results in an incomplete closure of the cleft, scar tissue buildup, or issues with speech or feeding difficulties. In any case, your surgical team will identify whether further steps are needed after the initial surgery and will tailor the plan to your child’s needs.
What can I expect after surgery?
Pain management
Like all surgical teams, the staff at Lurie Children’s will ensure children undergoing surgery feel as comfortable as possible before, during, and after the procedure(s). Your child’s physician will also provide pain management options that are appropriate for their age.
Scarring
Surgery will leave scars and it’s normal to be concerned about their appearance and how noticeable they will be. The appearance of scars can sometimes be mitigated with massaging, topical ointments, and taping. Your surgical team will outline options for this during the recovery period.
What does recovery look like?
Cleft lip
Usually, there are no feeding modifications associated with a cleft lip repair, and children are expected to have smooth recoveries. Most patients will stay overnight at the hospital to monitor for pain, but your medical team will provide you with more details when that time comes.
Cleft palate
Parents can expect that baby will stay overnight after their surgery to monitor feeding and pain control after the procedure. Most children are eating and drinking comfortably after the first night and are discharged home at that time. Usually, patients are sent home with elbow immobilizers to keep baby from putting their hands or objects into their mouth for at least four weeks after the procedure. Before the surgery, between 6-8 months of age, speech therapists will offer parents techniques and resources for feeding, such as open cup feeding—this prep will best equip parents for the recovery period.
Common post-surgical concerns
Lurie Children’s providers work to overcome secondary problems through the collaboration of their cleft and craniofacial clinic—a diverse team made up of specialists from plastic surgeons to dentists and beyond—who are experts in helping patients recover from their revisions as smoothly as possible.
While cleft palate can make feeding and weight gain challenging for young children, Lurie Children’s speech therapists work with families to help mitigate these concerns and any issues with feeding the child may have. In instances where speech problems are a consequence of cleft lip or cleft palate, Lurie Children’s patients and families work closely with speech pathologists via their speech therapy program, which allows for comprehensive, individualized care optimized for the child’s recovery.
Parents may worry about how their child will feel about their appearance and about potential social difficulties or bullying as healing occurs. Lurie Children’s cleft lip and palate repair team includes psychologists and social workers who help ensure the emotional well-being of young patients with cleft lip and palate repair as they grow up.
How can parents help their child’s healing process?
Parents and families play a key role in their child’s healing journey following cleft lip and/or palate procedures. Physical support includes following physician instructions for pain medications, massaging the child’s scar tissue, following diet recommendations, and keeping the surgical site clean and dry. However, emotional and social support is just as important during this process, so it’s important to have patience, be compassionate, communicate openly, and maintain a regular routine as much as possible.
Your routine post-op care will be conducted with your pediatric plastic surgeon on a frequent basis. After the second year of life, your LO will have annual visits at a multidisciplinary cleft team clinic. The team visit approach streamlines the evaluation and treatment process, quickly connecting you with the best specialists to manage your child’s condition. Each treatment plan is customized for the child as we consider the medical and developmental needs of the child, as well as the needs of the family. Due to a newborn’s outstanding healing abilities, the results of the surgery are excellent both aesthetically and functionally. Children born with this condition have an outstanding quality of life and a normal life expectancy and, thanks to pediatric institutions like Lurie Children’s, the process from diagnosis to healing is more streamlined than ever.
About Ann & Robert H. Lurie Children’s Hospital of Chicago
Led by a team of world-renowned pediatrics experts, Lurie Children’s is the #1 pediatric hospital in Illinois and an institution we trust for all things kids’ health. With 140 years of clinical expertise, research, and community engagement, the team at Lurie Children’s is committed to putting children and their families at the center of everything they do. We are honored to partner with Lurie Children’s to help educate our readers about how we can help our kids lead a healthier future. Learn more about Lurie Children’s and find a doctor near you today!
This post was in partnership with Ann & Robert H. Lurie Children’s Hospital of Chicago, but all of the opinions within are those of The Everymom editorial board.