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news News Tuesday, August 28, 2018 Tuesday, August 28, 2018 11:40 AM - Tuesday, August 28, 2018 11:40 AM

Carlow receives specialized care for rare malformation

Carlow receives specialized care for rare malformation

Carlow seated, smilingFrom an early age, Rebekah Vincent’s grandmother instilled in her a love of China and the Chinese culture. Growing up, she would travel throughout the Asian continent, visiting friends in Hong Kong, and taking in the languages and traditions. As an adult, Rebekah continued to pursue her passion for the country. Following her marriage to husband Brad, Rebekah explored adopting children from the United States on multiple occasions, with each opportunity ending unfulfilled. After several attempts, Rebekah set her sights and her hopes on China.

In early 2005, the Vincents adopted a little girl from China named Katie, and were home just six months when a friend told them about Cordie, a special needs child in need of a family. Born with albinism and placed for adoption in China, the little blonde girl was legally blind with acute photosensitivity. Despite having just returned home with Katie, Rebekah was insistent that they adopt young Cordie. In March of 2006, the Vincents brought Cordie home to Madisonville, Kentucky. That June, the family's adoption agency received paperwork for Carlow, a 3-year-old child with special needs living in China.

“So I asked my husband and he said ‘Are you crazy, we just got home!’” Rebekah recalled. “So I just kept pestering the adoption agency, asking ‘has anyone looked at his paperwork?’ We got to a point where China was going to change their rules for adoption, and if we did not adopt him, we would lose this opportunity and not be able to adopt again. I wanted to be his mom.”

With their window of opportunity closing, the Vincents submitted the paperwork, making the submission in time to avoid the impending changes to the adoption process. Ready to bring Carlow home, the Vincents traveled yet again to China, where they encountered an unanticipated development. After unexplained delays, the Vincents were handed a 14-month-old baby. In an attempt to enroll him in the adoption process sooner, Carlow’s age had been misrepresented, much to the surprise of Rebekah and Brad. The adoption agency handed the family bottles and diapers.

Despite the unexpected difference in age, the Vincents were prepared to bring Carlow home, having previously received medical information that included Carlow’s unique physical condition. While not informed of several unrelated medical conditions, the couple was aware that Carlow exhibited severe deformities of the hands and feet, a condition that they had researched extensively prior to Carlow’s adoption.

“We knew that his fingers, hands and feet were affected,” Rebekah said. “We saw pictures and knew that they were uniquely him. We knew that it was ectrodactyly, and we had researched it. We had taken our paperwork to the pediatrician and asked what to expect, and they recommended against adopting him.”

Undeterred, Rebekah reached out online to families who had children with similar difficulties. As part of her outreach, she encountered a family from Alexandria, Louisiana, who had a son with strikingly similar features, currently being treated at Shriners Hospitals for Children — Shreveport. Encouraged by the interaction, Rebekah contacted the Shreveport Shriners Hospital prior to adoption. Within a month of arriving home, the family had an appointment for assessment of the child's ectrodactyly.

Ectrodactyly is a rare genetic disorder included as part of a group of "split hand/split foot malformations." The condition is generally characterized by missing central digits in both hands and feet, with a cleft resulting in a deep V-shaped separation in each appendage. Digits in hands and feet can also be "mittened" together, a condition known as syndactyly. In Carlow’s case, he exhibited clefts in both hands and feet, with two separated digits on his left hand, and three digits on his right hand (with two connected via syndactyly). Both feet included two digits, each with a cleft separating them.

Surgeons at the Lexington Shriners Hospital initially performed a procedure to shorten a finger on Carlow’s right hand to help it better interact with its coupled finger. In the interim before Carlow’s next surgery, the Vincents moved to Gulfport, Mississippi, placing the family under the care of the Shreveport Shriners Hospital staff. Shreveport surgeons promptly began the process of separating the fingers on Carlow’s right hand, followed by the rotation of a finger on his left hand to help change his grip from a scissor style grasp to a more capable pincer grasp.

By 2017, Carlow’s big toes were pointing nearly backward, causing bunions, inflammation and difficulty wearing shoes. The medical team at the Shreveport Shriners Hospital performed procedures to help straighten both toes, alleviating the pain and allowing Carlow to wear shoes more easily. Carlow has since taken up karate, promptly advancing to the level of orange belt.

As Carlow grows, the Shreveport team will perform additional procedures to further separate the fingers on his right hand and address issues related to scar tissue. Until then, the 13-year-old, who loves books and strategy games, will continue his schooling alongside his two older sisters. Though the Vincents have since returned to their home state of Kentucky, the family is determined to remain under the care of their Shriners Hospitals for Children — Shreveport medical team. Making the 1,200-mile round trip for each visit by car, train and taxi, the family feels a strong connection with their medical team and their hospital.

“This is our hospital,” Rebekah said. “These are the people who know us by name, and this is the place that is a home away from home. It’s worth it to know that when Carlow comes here, the staff know him and love him just like I do. It means a lot.”

Carlow at a very young age, flanked by his two sisters holding his hands