July is National Cleft and Craniofacial Awareness Month

Alyssa KirkmanAwareness, Family Services

Patients today may overcome the challenges of these conditions and thrive,
with the support of a diversified, team-based care model

CHAPEL HILL, N.C. / July 10, 2018 – From their beaming smiles, you would never have known the paths these three had been on since birth; a common journey that began with a diagnosis no parent anticipates:

We found out at our 20-week scan about Ethan’s cleft lip and possible palate involvement. We were devastated to hear of the long journey of surgeries and doctors and complications our baby would have …

It was during one of many ultrasounds that we found out we were having a girl … That same scan showed that our daughter Vilija had a cleft lip and palate … Truth be told, I was terrified. I didn’t know what to expect. I cried. I cried some more …

 Once Kayla appeared my husband and I were completely in love and in total shock. The doctor’s first words were: “It’s a girl and she has a slight abnormality called a cleft lip.” We had never heard of a cleft lip before … Our baby girl, Kayla, was born with a unilateral cleft …

Each year in the U.S., thousands of babies are born with a cleft, occurring when tissue in the baby’s upper lip or roof of the mouth does not join together completely during pregnancy.

July is National Cleft and Craniofacial Awareness Month. The American Cleft Palate-Craniofacial Association (ACPA) is raising awareness about these conditions and those such as Ethan, Vilija and Kayla living with a facial difference nationwide, as well as the specialized care and resources the association and its members provide during the typically long and challenging treatment regimen.

As Kayla grew and began school, it wasn’t always easy. In kindergarten, she had her first scar revision. She would compare herself with others. Some would even ask her what happened to her lip. In first grade at age six, Kayla had a bone graft; they took bone from her hip and placed it in the gap of her alveolar which is the bone where your teeth sit. She was in the hospital for several days. Kayla returned to school as soon as she was able with a cute little hobble due to the pain in her hip …

Ethan did not spend any time in the NICU and ate like a champ using a specialty bottle. At a few weeks old, he received a NAM device that he wore until his first surgery at three months for lip repair. Our surgeon was amazing and we were so pleased with the results. At nine months Ethan had his second surgery on his palate. His palate came unstitched a week later and he had his third surgery to repair it …

Vilija made her way into the world with a wide unilateral cleft lip and palate. We saw past the cleft and saw a precious baby who had been kissed by an angel. She was absolutely beautiful, and her surgeon just enhanced that beauty. Vilija has undergone a total of 10 surgeries and last year we found out that she isn’t in need of any more. 

The diverse needs of patients with cleft and craniofacial conditions make interdisciplinary team care essential. ACPA Approved Teams are comprised of qualified professionals from medical, surgical, dental and allied health disciplines who ensure that care is provided in a coordinated and consistent manner, with the proper sequencing of evaluations and treatments within the framework of the patient’s overall developmental, medical and psychological needs.

Through its Family Services program, ACPA also provides educational materials for patients and families on cleft and craniofacial treatment and care including its popular “Feeding Your Baby” videos with information on specialty bottles for infants with cleft palate.

ACPA’s overarching goal is to foster circumstances that enable these patients to thrive.

My soon-to-be 16-year-old daughter has never shown any bitterness over being born with a cleft or needing so many surgeries. She’s never ever had any problems with self-esteem nor self-confidence. Vilija is proud of who she is and what she’s endured. My beautiful girl is a high school sophomore dance major in performing arts school. Last week she was inducted into the National Honor Society as well as the National Honor Society for Dance Arts. She truly has been a shining star throughout her cleft lip and palate journey, both on stage and off!

Ever since Ethan was born, he has done nothing but blow us away with his strength, happiness and resilience … He healed remarkably and brings nothing but joy to those around him. Ethan is a happy boy!

Our sweet, tender-hearted, compassionate girl just graduated from high school. It has not been an easy journey. There have been bumps along the way with many tears shed. However, because of all Kayla has been through and endured, she has become a stronger young lady who is ready to face this world and help those she comes in contact with along the way.

To learn more about the association, cleft and craniofacial conditions and to find resources and care in your community, please visit acpa-cpf.org.

About the American Cleft Palate-Craniofacial Association
The American Cleft Palate-Craniofacial Association (ACPA) is a nonprofit 501(c)(3) association of interested individuals and health care professionals who treat and/or perform research on oral cleft and craniofacial conditions. Since 1943, ACPA has worked to optimize outcomes for individuals with oral cleft and craniofacial conditions through education, support, research, advocacy and interdisciplinary team care. ACPA also provides information to affected individuals and families and seeks to educate the public about facial differences through its ACPA Fam