A World of Difference

CHKD’s specialized team steps in to continue Cullen’s care

Cullen Knight blows bubblesCullen Knight’s four years of life have been an extraordinary journey – both of distance and perseverance. This energetic preschooler tackles each stop along the way with an exuberance that is contagious.

Cullen was born 7,000 miles from CHKD, in Beijing, China, with a bilateral cleft lip and palate. A cleft lip occurs when the tissue that forms the upper lip does not join completely before birth. In a cleft palate, the growth plates that shape the roof of the mouth fail to close, leaving an opening between the mouth and the nose. These defects can be corrected through a series of progressive surgeries and often require dental intervention and speech therapy that can last for many years.

Because Cullen’s cleft was bilateral, affecting both sides of his mouth, feeding was difficult. He received basic surgery while in China and was moved from a large orphanage to a healing home, where children with surgical needs are cared for in smaller group settings. All he needed now was a special family who could make sure he received the years of ongoing medical care his condition would require.

In March of 2011, Angela Eckhoff made the 14,000 mile round trip to China to give Cullen the family he needed. A year before, she and her husband, Ben Knight, had adopted Griffin, a baby boy from Kazakhstan. They were completely ready to open their family to another child who needed a home.

Cullen was already 18 months old when Angela arrived. “I worried that the bonding process would be a challenge, but Cullen and I had an instant bond,” Angela recalls. “He was so excited to be out seeing the world – and he’s been that way ever since.”

Soon after their return, the family moved from South Carolina to Norfolk, where Angela would start a new job at Old Dominion University, and Cullen would be able to receive the multi-disciplinary care he needed at CHKD’s craniofacial clinic – just minutes from their new home.

Craniofacial abnormalities are often complex and require therapies and surgeries from many medical disciplines. The CHKD craniofacial team consists of pediatric specialists in cranio-maxillofacial plastic surgery, neurosurgery, otolaryngology (ear, nose and throat), dentistry, psychology, general pediatrics, medical genetics, orthodontics, speech therapy, social work and nursing. Using the latest research and technology, along with years of experience, this internationally respected team works together to determine the best plan of care for each child.

Leading the surgical team in Cullen’s case was CHKD plastic surgeon George Hoerr, one of the region’s only cranio-maxillofacial plastic surgeons who works exclusively with children.

“Cullen came to us with his lip repaired and his palate partially closed during surgeries in Beijing,” explains Dr. Hoerr. “The first thing we needed to do was to close the opening in his palate which remained after the initial repair. This procedure involved rearranging the tissues in the roof of the mouth, reopening the palate and suturing it all back together. Cullen handled the procedure with the spirit we continually see from him and has healed beautifully.”

Cullen has had several additional surgeries to enhance his vocal function and articulation. These included placement of ear tubes and removal of his tonsils and adenoids by Dr. David Darrow, a otolaryngologist and member of the craniofacial team. CHKD’s craniofacial program will continue to follow Cullen for many years, addressing his need for therapies, additional surgeries and dental corrections as he grows and matures.

Despite years of treatments and procedures, Cullen gets excited for visits to CHKD. Even at age 4, he seems to truly understand that everyone is working to help him.

“Cullen will likely undergo more surgery down the road in an attempt to further assist him with his speech,” says Dr. Hoerr. “And I’m sure he will continue to show the same enthusiasm that we’ve seen from the first time we met him!”

Angela, who has a PhD in educational psychology and cognitive science, is impressed with just how good the CHKD team is with their young patients. “As someone who spends my career teaching people about kids, it’s wonderful to see that the team at CHKD really knows how to interact with these children,” she says. “They don’t just talk to me, they talk to Cullen. They talk on his level and ask him questions – all the things that make him feel comfortable. With the many procedures these kids go through, you don’t want them fearful of doctors or surgeries. Everyone understands that. They are all so gentle and kind and playful … everything you want to have happen with your child.”

Children with craniofacial abnormalities need to be seen by multiple specialists every three to six months and even more frequently surrounding surgeries. The team approach at the CHKD craniofacial program works to make this as convenient as possible.

“We work hard to make things as manageable as possible for our families,” says craniofacial program coordinator, Karen Via. “Rather than multiple appointments, we schedule the patients for one session where all the doctors and therapists come together to conduct evaluations.”

Angela appreciates this coordination of care. “It is wonderful for us to take care of everything at a single time and place,” she says. “It’s also reassuring to see the doctors and therapists collaborate on Cullen’s course of treatment.”

As with many patients with cleft palate repairs, Cullen has also spent a large amount of time in speech therapy – a critical part of the process. The abnormalities of his palate can make the control of airflow and proper formation of words difficult.

As with many patients with cleft palate repairs, Cullen has also spent a large amount of time in speech therapy – a critical part of the process. The abnormalities of his palate can make the control of airflow and proper formation of words difficult.

Cullen’s speech is currently about 60 percent intelligible to people who don’t know him and will continue to improve. But instead of becoming frustrated at constantly being asked to repeat himself, he simply explains, “It’s hard for you to hear me because I had a hole in my mouth.” Then he repeats his words, slowly and patiently, until he is understood.

“When we were initially considering adopting a baby with a cleft lip and palate, it was overwhelming to be told that treatment could involve years of speech therapy and up to ten surgeries. But thanks to CHKD’s craniofacial program, it’s been completely manageable. Cullen is doing better than we imagined, and in day-to-day life, it really doesn’t affect us. We’re very lucky,” says Angela.

The thousands of miles from China to his new home were merely the beginning of Cullen’s long journey. But to this bright-eyed 4-year-old who loves parks and museums, every step is an adventure – and he welcomes each challenge along the way with an exuberant smile that he has truly earned.

Dr. Hoerr works with CHKD Surgical Group’s Plastic Surgery practice. Dr. Darrow practices with EVMS ENT at CHKD.

The Team Approach - CHKD Craniofacial Team Receives International Accreditation

The CHKD craniofacial program has received team accreditation status with the American Cleft Palate-Craniofacial Association (ACPA). Accreditation status assures families that the CHKD craniofacial team meets the standards necessary to provide comprehensive patient care. CHKD is one of only three craniofacial programs in Virginia to receive this accreditation, and is the only one that deals exclusively with children.