Elliana's resilience through countless cleft lip and palate surgeries

Meet Elliana Belew, a vibrant and energetic nine-year-old girl with a boundless zest for life. Whether she's drawing, writing, coloring, or playing games, Elliana's enthusiasm is contagious. However, behind her radiant smile lies a remarkable story of strength and resilience. Born with bilateral cleft lip and palate, Elliana's journey has been one of challenges, surgeries, and triumphs. Yet, through it all, her strength has never wavered. 

 
Elliana's journey started even before her birth. Her mother, Bridget, fondly recalls Elliana as an active baby in the womb, constantly kicking and moving around. However, around 25 to 30 weeks, Bridget sensed a shift. Concerned by the sudden stillness, she scheduled an appointment with her OB-GYN. 

"I remember feeling puzzled when she stopped moving," Bridget recounted. "I tried everything, even sugary drinks, to get her kicking again, but nothing worked. That's when I started feeling uneasy. It turned out the reason why I could not feel her movement was because I had the flu. During Elliana’s ultrasound, I also found out that Elliana had bilateral cleft lip and palate. Seeing the images and hearing the diagnosis was a lot to take in. I felt a mix of fear, uncertainty, and questions about my baby’s future.” 

Bilateral cleft lip and palate is a congenital condition characterized by splits or openings in both the upper lip and the roof of the mouth (palate). This condition occurs during fetal development when the tissues that form the lip and palate do not fully fuse together. As a result, children born with bilateral cleft lip and palate may experience difficulties with feeding, speech development, dental issues, and facial appearance. Treatment typically involves a series of surgeries to correct these malformations. 

After Elliana’s diagnosis, Bridget soon found herself wondering, "What do I do from here?" With little knowledge about this condition, she embarked on a journey of research and discovery. Determined to find the best care for her daughter, Bridget came across the Craniofacial Center at Children's Hospital New Orleans during her online search. Without delay, she called the clinic, and explained her situation.  

In July 2014, when Bridget was around 28 weeks pregnant, she met with the cleft lip and palate team at Children’s Hospital. Together, they discussed Elliana's condition and outlined the comprehensive care they would provide once she was born and the series of surgeries that she would need in the future. 

On September 2, 2014, at West Jefferson Hospital, Bridget, who was 39 weeks into her pregnancy, welcomed her daughter, Elliana, who weighed a healthy eight pounds. 

"I was filled with pure joy and relief when Elliana was born," Bridget recalled. "Before her, I had endured two miscarriages and an ectopic pregnancy, so her arrival was incredibly precious to me. However, Elliana had a few health hurdles after birth. It wasn't until she was four days old that I got to hold her." 

During her time in the neonatal intensive care unit (NICU), Elliana underwent treatment for jaundice through phototherapy, a standard procedure for newborns with elevated bilirubin levels. She also relied on oxygen support and a feeding tube. The cleft team from Children’s Hospital visited Elliana in the NICU offering specialized assistance with her feedings. During Elliana’s two-week stay, Bridget learned feeding techniques tailored for babies with cleft lip and palate to prevent aspiration. Bridget was nervous about bringing Elliana home, fearing potential complications. Knowing Elliana would need corrective surgeries, Bridget found solace in the simple joy of having her at home, treasuring every precious moment with her. 

"I was relieved to have the cleft lip and palate team at Children’s with us right from the beginning," shared Bridget. "After Elliana was born, we practically became regulars at the clinic. Starting speech therapy shortly after birth to assist with her tongue movement and control, and participating in occupational therapy for muscle strengthening, Elliana's care involved a multidisciplinary approach. We were routinely seeing numerous specialists – plastic craniofacial surgeons, OMFS, ENTs, geneticists, pediatric dentist, craniofacial orthodontists, psychiatrists, cardiologists (Elliana had a PDA), audiologists, nurse navigator, craniofacial pediatrician, and physical, speech, and occupational therapists – and having all of them under one roof made everything, including coordinating Elliana’s care, so much easier for us." 

The Craniofacial Center at Children’s Hospital New Orleans provides expertise and support for families facing the complexities of craniofacial conditions like cleft lip and palate. Staffed by fellowship-trained specialists, it offers comprehensive care for infants, children, and adolescents in Louisiana and the Gulf South. With a multidisciplinary approach, the center ensures seamless collaboration among healthcare providers to develop tailored treatment plans for each child. As the region's largest team of fellowship-trained craniofacial surgeons, the center exemplifies excellence and compassion in pediatric health care. 

Elliana’s first surgery 

On January 28, 2015, at just 4 months old, Elliana had her first surgery, which included a lip repair, rhinoplasty, and ear tube insertion. During this procedure, cartilage was added to her nose, and a neonatal tooth was removed from her mouth. Her second surgery addressed her bilateral cleft palate.  

“The primary goals of surgical intervention are to repair the cleft lip, restoring facial symmetry and function, and to close the cleft palate, enabling proper feeding, speech articulation, and preventing complications like ear infections,” explained Dr. Mohamad Masoumy, surgical director of plastics and craniofacial surgery at the Craniofacial Center at Children’s Hospital. He further elaborated, “These surgeries are often performed in various stages, with initial procedures focusing on repairing the lip and nose, followed by palate repair surgeries to close the opening in the roof of the mouth. Additional surgeries may be necessary as the child grows to address any residual issues and optimize outcomes.” 

Throughout her lifetime, Elliana has endured between 10 to 15 surgeries, including multiple lip and palate repair surgeries and nine ear tube insertions. In addition, she also has undergone two bone graft surgeries, with the first one performed at the age of 7. During these procedures, bone is added to her gum line to address the cleft, with bone taken from her hip. The recovery from these surgeries was extremely challenging, requiring a liquid diet and other restrictions. Despite the difficulties, scans confirmed successful bone graft integration three months after the final surgery. 

“It’s been a tough and arduous journey for Elliana,” shared Bridget. “Each surgery she's undergone has significantly enhanced her smile, marking a profound transformation. When I saw my baby for the first time after her first surgery, I just cried. She looked like a whole different baby! Just recently, she began wearing braces, and about a year ago, she started using a palate expander to widen her palate. Her next milestone will be jaw surgery, but until then, she's been doing exceptionally well. We are grateful to have such an exceptional team at the clinic who has provided Elliana with love and support throughout her journey. Their expertise and compassion have made all the difference in her progress and well-being." 

Elliana’s care team includes Dr. Mohamad Masoumy (plastics/craniofacial surgery), Dr. Regina Zambrano (genetics), Dr. Brett King (oral maxillofacial surgery), Dr. Leslie Slowikowski (orthodontics), Dr. J. Scott McMurray (otolaryngology), Dr. Suzanne Fournier (dentistry) and Patrice Haywood (speech therapy). 

"While this journey isn’t what they had expected, Bridget says she has learned so much from her daughter’s courageous journey. She describes Elliana as the strongest kid she knows and a living miracle. 

Elliana often asks me, 'Why did God want me to be born different?'” said Bridget. “I tell her, 'Because God knew you were strong enough to teach others. You can teach others how to be kind, how to love one another and that being different is beautiful.’ She responds, “You’re right, mom,” with a big smile. 

To learn more about how the Craniofacial Center at Children’s Hospital is making a difference in the lives of patients like Elliana, visit their website: Craniofacial Surgery | Children's Hospital New Orleans (chnola.org)