As a plastic surgeon working with children and adults with cleft and craniofacial anomalies, I am particularly fond of July, the month that brings the issues and challenges of craniofacial differences to the foreground. Most people don’t realize that 1 in 38 babies will be born with congenital (birth) anomaly such as a cleft lip, cleft palate, craniosynostosis, or other pediatric congenital conditions that can affect the body from head to toe.
Many people think that clefts only occur in children born in “other” countries, but in the United States, 1 in 700 are born with clefts each year and 1 in 2500 are born with craniosynostosis. Clefts occur when tissue in the baby’s upper lip or roof of the mouth (palate) do not join together completely during pregnancy. Craniosynostosis is when the connection between the skull bones prematurely close and this can affect the development of the skull, the brain, and the face.
My objective is to help raise awareness about these conditions and bring attention to the specialized care required for children and adults with cleft and craniofacial differences. Also, online search for quality content can be quite daunting, so I also want to provide some resources for patients and families. National organizations like the American Cleft Palate – Craniofacial Association (ACPA) provide high-quality educational and practical resources for families. Another common challenge that families encounter is the refusal of insurance companies to pay for the surgical procedures. It is not uncommon for the insurance to pay for the first procedure, and consider the rest of these necessary procedures as “not medically necessary” or “cosmetic.” For instance, I’ve had many children referred to me who developed holes called “fistula” after their cleft repair. This fistula causes food and drink to come out of the nose. There is nothing cosmetic about being able to eat without food coming out of the nose, and nothing more mortifying for a child or adult to confront.
How One Patient Story Triggered A Chain Reaction For Change
Back in 2018, I had such a case when one of my young patient’s surgery was denied on the day before his surgery. He would have food and drink coming out of his nose when he ate because he developed fistulas after several childhood surgeries. He referred to me for reconstruction. His name is Carter.
Together with his parents and advocacy teams, we worked tirelessly to help implement changes that will benefit other patients like Carter. This led to a bill in New York State known as Senate Bill S7709 – “Give Kids A Chance– Carter’s Law” that will mandate health insurance coverage for children with congenital anomalies including certain reconstructive and rehabilitative services including inpatient and outpatient procedures. I am so proud of the young boy that Carter has become, and this would not have happened without the perseverance, grit, and determination with which we all fought to advocate for rights of children such as Carter. The years of work yielded fruitful results, and it’s inspiring to see him, and his family, continue to carry the message and to advocate making sure legislators are listening and holding companies responsible for doing the right thing for children or adults who need to have these important surgeries done.
While many states are making headway, there are many others that still do not consider this type of care reconstructive. They still classify it as cosmetic and not medically necessary. If you know anyone who was born with a cleft or craniofacial difference, you probably know how important the series of reconstructive surgeries is to ensure more normal functionality to that person’s life.
As a member of The American Cleft-Palate Craniofacial Association (ACPA) and The American Society of Plastic Surgeons (ASPS), I am proud that these organizations are playing crucial roles in advocating for increasing congenital anomaly coverage at the federal level through the Ensuring Lasting Smiles Act (ELSA). It is great to see that support for similar legislation at the state level has begun to grow throughout the country.
Non-Profit Organizations Unite To Promote Awareness
This year, several leading non-profit organizations are joining forces to educate the public during National Cleft and Craniofacial Awareness and Prevention Month in July. The organizations are dedicated to serving patients and their families through education, advocacy, awareness, and support groups. The organizations include the American Cleft-Palate-Craniofacial Association (ACPA), Smile Train, myFace, Operation Smile, Resurge International and the Children’s Craniofacial Association.
This July, join me in celebrating our patients and families with cleft and craniofacial differences. They are some of the most amazing children and adults you will ever meet during your lifetime. Happy Cleft and Craniofacial Awareness and Prevention Month to you all!