Metamorphosis

This story is a follow-up to “Home is Where the Heart Is” that was published in April 2016

Janan Campbell’s mother, Dawn, describes her 4-year-old son as a tenacious problem solver.

“He meets every challenge and exceeds,” Dawn said.

From playing with matching objects to reading with his siblings, Janan’s transformation from one year ago has his physicians mystified. Last April, Janan was fighting for his life at UF Health’s pediatric cardiac intensive care unit after arriving from China with his adoptive parents.

A race against time

In November 2015, Dawn, a former special education teacher, and Keith, a former teacher-turned-pastor, learned about Janan, a 3-and-a-half year-old boy who was living in an orphanage in southwest China. The adoption agency told the Campbells that Janan would need immediate medical attention for what appeared to be an abnormal heart condition. Dawn and Keith were unsure of the severity of Janan’s condition, but this was not the first time the couple was faced with a congenital heart abnormality. Two of their 10 children share a similar diagnosis and have spent time at the UF Health Congenital Heart Center.

After learning more about Janan’s ailment from the adoption agency, Dawn reached out to Jay F. Fricker, M.D., a pediatric cardiologist at the heart center, and Connie Nixon, R.N., a clinical coordinator at the heart center. The team reviewed Janan’s medical records available from the orphanage with the help of a center fellow who translated the records from Chinese to English.

After reviewing Janan’s file, the situation escalated from serious to critical. In addition to Janan’s heart abnormality, he had a fractured femur, bleeding within the brain and series of spastic episodes. Fricker analyzed Janan’s medical records and brought in the medical expertise of Suman Ghosh, M.D., M.P.A., a pediatric neurologist at the UF Health Shands Children’s Hospital, to assess Janan’s neurologic state. As a result of Janan’s increasingly poor condition, the adoption process, which typically takes a year or longer, was expedited to a matter of months.

On March 4, Dawn departed with a close friend, anxiously hoping to see her little one. Chinese officials would collect and finalize adoption paperwork for two weeks. Dawn communicated status updates with Fricker and Nixon despite a 12-hour time difference.

After being cleared by Chinese authorities, Janan and Dawn returned home, traveling from China to New York to Orlando. On March 16, Dawn drove directly from the airport to the UF Health Congenital Heart Center in Gainesville.

Physicians conducted a heart catheter procedure during which Janan was diagnosed with several defects, including transposition of the great arteries, a condition where the aorta and pulmonary artery are reversed; dextrocardia, a condition where the heart is reversed at birth; and a right aortic arch with atrial septal defect. In this rare heart defect, the aortic arch, a part of the main artery that assists with blood flow from the heart, is located on the right side instead of the left.

Becoming Janan

One year later, Janan thrives in all that he does. After our story was published, Janan remained in the pediatric cardiac intensive care unit until May and returned in July for observation of his pulmonary hypertension. Since then, Janan has developed his gross motor skills by being able to walk with the assistance of a walker, climb the ladder of his outdoor playset and crawl to his siblings.

“He loves his siblings. He’ll roll to wherever they are because he wants to do what they do,” Dawn said. “He’s very outgoing and he initiates play with them. He recognizes them as family.”

In addition, Janan has made significant cognitive strides including matching objects, remembering the names of body parts, and feeding himself with a fork and spoon. In the past month alone, Janan has gone from being bottle fed to eating solid food.

“He’s like a butterfly,’’ Dawn said. “My little guy was in a cocoon, but now it’s breaking open and he’s growing his wings.”