As a plastic surgeon with specialized training in pediatric craniofacial reconstruction, and a proud active member of the American Cleft Palate-Craniofacial Association (ACPA), I make every effort to support the work of this extraordinary non-profit organization. July is dedicated to National Cleft and Craniofacial Awareness and Prevention and I love to contribute to greater awareness in any way that I can. The ACPA supports and educates families starting from the vulnerable beginning points in their cleft and craniofacial journeys into adulthood. In the past year, ACPA has connected with more than 10,000 families and provided personal and emotional support via phone, social media and email.
Lacey’s New Smile
One of those 10,000 stories is one in which I had the privilege to serve as the surgeon. My patient is a very sweet and vibrant girl named Lacey, who was born with a bilateral cleft lip and palate. I performed the surgeries Lacey required as well as all follow-up care for Lacey and her loving family. I am grateful and humbled at the appreciation shown to me and my team from many families such as Lacey’s.
Lacey’s parents wrote, “Our daughter, Lacey, was born with a bilateral cleft lip and palate. She had lip adhesion first, then palate, and finally her repair–just recently. Lacey’s providers are members of ACPA, Dr. Adetayo and Joanne Wennstrom, and they are amazing. We couldn’t be more thankful for her team and happy with our choice. They have always been attentive to our needs and made sure we got all the help we needed, whatever it was, both before and after surgery.” They go on to note that, “Everything Lacey has done has been amazing. Her dentist even commented on how perfectly her palate was put together.” I especially love the last line of their note which says, “We loved Lacey’s smile before, but we also love it now, too!”
You can read heartwarming stories about the amazing help provided by the ACPA to children like Lacey and others on their website. In the link below, you can see the early stages of Lacey’s journey as she underwent her surgeries. She has since completed her cleft reconstructions and she is doing well.
You may be surprised to know that, in the United States alone, (A) about 1 in every 1,600 babies is born with cleft lip with cleft palate; (B) about 1 in every 2,800 babies is born with cleft lip without cleft palate; (C) about 1 in every 1,700 babies is born with cleft palate; (D) 1in every 2,500 babies is born with craniosynostosis; and (E) Cleft and craniofacial conditions affect thousands of infants, children, teens and adults in the United States each year. Some are born with congenital anomalies like cleft lip and palate, others with more complex, life-threatening conditions. Some are burned; others are injured in accidents and animal attacks or diagnosed with various oral/head/neck and skin diseases, and many have wounds affecting these areas. As common as it is in the U.S., imagine how many more cases exist worldwide.
You Can Help
Can you imagine the distress of new parents after birth worrying about how to repair the lip and palate of their newborn? Can you imagine the overwhelming feeling of knowing your child will need numerous surgeries beginning at 3 months of age and possibly well into teen years or adulthood? Can you imagine the expense of surgery, speech therapy, dental orthodontics, and other long-term support for these children with these differences? Unless you have been personally affected or know someone who has been affected, chances are that it’s difficult to imagine how excruciatingly stressful the process can be.
Individuals and families with craniofacial differences and their families often struggle to understand the diagnosis and treatments; Families are often under emotional and financial strain due to demands resulting from ongoing, complex, and expensive medical treatment. Sometimes families encounter difficulties with insurance coverage for the necessary care resulting in additional stress for the families..
There is often a lack of education and information disseminated to the general public. Many individuals like myself, are partnering with organizations such as the ACPA, Smile Train, and other organizations to improve public education and awareness. For instance, factors such as smoking cessation and controlling diabetes help decrease the chance of craniofacial cleft births. Due to the complexity of craniofacial syndromes and need for many specialists, the majority of affected individuals will often undergo many procedures and surgeries into their years. It is also important that these children and adults receive important therapies related to their diagnosis that improve quality of life, such as speech, hearing, dental, orthodontics, language development, and psychological support needs.
There are numerous ways to get educated and help individually and/or corporately. Despite the fact that we are in the midst of a global pandemic, babies are still being born. And many of them are being born with cleft lips and/or cleft palates or other craniofacial syndromes. Now more than ever it is important to help these vulnerable children be able to live as well as possible. If you would like to know more, if you would like me to speak to your organization via Zoom, please do not hesitate to reach out to me at (firstname.lastname@example.org.) You can also reach out to the ACPA at https://acpa-cpf.org/