Facial Birth Defects — Expert Advice for Parents
From head to toe, your baby’s health is your number one priority. That is especially true if your baby has cleft lip or cleft palate or another form of craniofacial defect.
If your family is preparing for your baby’s corrective surgery, you may have unanswered questions or want reassurance that your child can live a healthy, full life.
At the University of Miami Health System, plastic surgeons Devinder Singh, M.D., Lauren Michelle Yarholar, M.D., and Seth Thaller, M.D., D.M.D., take every opportunity to address the concerns of parents and advance the treatment of facial birth defects in kids around the world.
Remember, everything is going to be fine
As chief and program director of UHealth’s Division of Plastic Surgery, Dr. Singh wants parents in this situation to know, “You didn’t do anything wrong, and everything is going to be fine.”
Dr. Yarholar, who specializes in pediatric facial, craniofacial, and reconstructive surgeries, says “The surgery is only a small part of the journey for your baby and your family.”
UHealth’s Cleft Lip and Cleft Palate Program can support your child’s overall health and wellness with multidisciplinary care. “Cleft care at UHealth has had a long and distinguished history, and the legacy remains robust and lasting till today,” says Dr. Thaller, who serves as surgical director of the cleft clinic. “We will provide care and support throughout your comprehensive care.”
Treatments may include surgery, physical and occupational therapies for difficulties with breastfeeding or swallowing, dental and hearing treatments, speech-language pathology, and social services.
Advice for expectant parents
Am I passing on a genetic family history of cleft palate or cleft lip?
Dr. Yarholar: If there is a family history, your child may have a slightly increased risk of cleft lip/palate. But there’s not much in prevention besides routine prenatal care, including vitamins, proper nutrition, and seeing your OBGYN.
When a cleft palate/lip or other craniofacial defect is seen on a prenatal ultrasound, are there early treatment options available?
Dr. Singh: Prenatal diagnosis is more and more common with the widespread availability of high-resolution ultrasound. We strongly encourage expecting parents to consult with our craniofacial team before delivery. There is so much education, counseling, and care coordination that we can do before birth.
The first surgery, usually the repair of the cleft lip, can occur as early as 10 weeks. Doctors can typically repair the baby’s cleft palate between 12 and 18 months of age. While intrauterine repair can heal scarlessly, this technique is a high risk to the unborn child, complicated, and essentially not performed anywhere outside of highly experimental protocols at major research institutions.
Dr. Yarholar: While there are no early treatment options, I believe the more education the parents receive before the birth, the better prepared they’ll be to take care of their baby. In addition to an intrauterine repair being high risk to the child, it can also be high risk for the mother.
My newborn has cleft lip/palate. What do I do?
Dr. Singh: Don’t panic. Nearly all children born with these conditions grow up to live completely normal lives. We have experts well versed in many treatments. Our specialists in plastic surgery, speech therapy, genetics, dentistry, audiology, and social work form an amazing craniofacial team that will help guide you and support your child every step of the way.
Dr. Yarholar: You’re not alone. One of the benefits of the internet and social media is that there are many support groups within your grasp. I would caution parents to be careful about the information obtained from the internet. Still, I feel that there is a significant benefit to connecting with other families who have already gone through the process. At the very least, ask your craniofacial team to connect you with parents/patients who are local and have similar concerns.
Treating pediatric facial defects around the world and at home
Is there a greater need for cleft palate/lip surgeries in developing countries?
Dr. Singh: Cleft lip and cleft palate are quite common, occur all over the world, and are multifactorial. Genetics, environment, and development all play a role. Genetic predisposition has been noted in some cases: it’s highest in Native American and Asian populations and lowest among those with African ancestry. Prenatal care, nutrition, and other healthcare resources also play essential roles in the frequency and distribution of disease worldwide.
Dr. Yarholar: In some areas of the world, access to resources is severely limited. There have been many volunteer organizations from all over the world that address the needs of developing countries. They not only provide services but also train and teach these communities how to evaluate, manage, and treat these patients.
Dr. Singh: Operation Smile is a well-known organization that provides humanitarian, pro-bono cleft care worldwide. UHealth has its own global health initiative and has made enormous differences for patients, especially in Haiti. I have joined cleft missions across the world, including in Thailand, Vietnam, Uganda, Eritrea, Colombia, Dominican Republic, Guatemala, and Honduras.
Dr. Thaller: Our commitment to cleft care extends to our neighbors in Haiti in collaboration with Project Medishare. Our team, including myself, has traveled to that country for more than two decades and plans to maintain our long-standing commitment. The goal of our ongoing interdisciplinary surgical missions — consisting of plastic surgery faculty and residents, medical school students, pediatric anesthesiologists, pediatricians, and nurses — remains improving the quality and condition of human life within that impoverished nation.
How is UHealth advancing pediatric craniofacial surgical care?
Dr. Yarholar: At UHealth, Dr. Ralph Millard was a previous chief of plastic surgery who developed the most commonly used technique to repair cleft lip to date. Dr. Millard’s contribution has been one of the most significant advancements in cleft care. I’m grateful for the opportunity to continue his legacy in the field of craniofacial surgery, and UHealth continues this tradition in delivering expert cleft care.
Dr. Thaller: The clinic has served as an exceptional foundation for the education and training of our residents and medical students in the comprehensive management of children born with clefts. We’ve established a number of novel procedures, such as outpatient iliac crest alveolar bone grafting, simultaneous tonsillectomy, and pharyngoplasty to enrich patients’ speech and hearing expeditiously, and the utilization of alloplastic substitutes to fully heal recalcitrant cleft palate deformities.
Our clinic has remained focused on providing a friendly, courteous atmosphere that addresses the concerns of each individual patient and family and develops a comprehensive treatment plan. This is consistent with our primary mission: enhance our patient’s life and provide ongoing support and guidance for both patients and their families. Our management goals are centered around the optimal physiologic timing for pediatric patients’ growth and development and the associated psychosocial concerns of our patients and families. The clinic has obtained full accreditation from the American Cleft Palate-Craniofacial Association to recognize its high standards for our multidisciplinary management of patients and families.
Dr. Yarholar: In addition, we are building a craniosynostosis program here. Our goal is to develop an international center of excellence for craniosynostosis treatment. We plan to take a multidisciplinary approach to care for these children. The team will include physicians and other critically important services to treat the surgical issue and take care of the entire child.
Dr. Thaller: To further our educational resources and commitment to the community, we have initiated several philanthropic endeavors with the focal commitment to benefit UHealth patients and families. This culminated in the creation of the Samuel and Connie Franklin Foundation Cleft Resource Library on the medical center campus. This unique endeavor is one of the very few nationally accessible libraries solely concentrated on patients and families.
To schedule an appointment (in-person or via Telehealth), please call 305-243-7500.
Dana Kantrowitz is a contributing writer for UMiami Health News.