by Jessica Pasley
When Kim Shrader and her husband, Wayne, adopted their son, Riley, six years ago, they knew he had a rare, genetic disorder that would require medical interventions.
The Knoxville family was told to look into hospitals in Massachusetts, Ohio and Arkansas for the specialized care that he would require.
But a simple internet search led them to Monroe Carell Jr. Children’s Hospital at Vanderbilt and the Vascular Anomalies Clinic, the only multidisciplinary vascular malformations clinic in the Midstate.
“The clinic has been an absolute lifesaver and blessing for us,” said Shrader. “I cannot express how fortunate we are to have found Vanderbilt. Riley’s diagnosis requires very specialized care.
“When he was first diagnosed there were only 200 cases in the world. Today, the cases have reached 250. And everyone at the clinic works so well with our pediatrician and other doctors in Knoxville.”
Now 11, Riley was diagnosed with CLOVES syndrome, a rare condition that is characterized by congenital overgrowth of fatty tissue, along with complex vascular lesions and orthopedic concerns. He is among several hundred patients who seek care at Children’s Hospital for abnormal growths or development of arteries, veins, capillaries or lymphatic vessels.
These malformations, which can occur anywhere on the body, can cause pain, bleeding, disfigurement and sometimes death.
Patient care often requires a team approach. The clinic brings together multiple disciplines including hematology, dermatology, genetics, otolaryngology, ophthalmology, diagnostic and interventional radiology, general and plastic surgery and cardiology.
Alexandra Borst, MD, assistant professor of Pediatrics and Hematology-Oncology at Children’s Hospital, is Riley’s primary physician and co-founder of the Vascular Anomalies Clinic, which began in 2018. Borst and James Phillips, MD, assistant professor of Otolaryngology, co-direct the clinic.
“Because these are fairly rare conditions and education about them is not very pervasive, most of our patients have seen on the order of 8-10 physicians before they receive a diagnosis,” said Borst. “The management of these conditions can be complex, and we want everyone at the table, which also includes our patients and their families.
“We all work together because we all bring a different expertise and experience in the care of the patients.”
The program has organized a patient and family event for Nov. 16 from 10 a.m. to 2 p.m. The event will include brief educational talks from the physician team, a welcome from a patient advocacy organization and a Q&A session to encourage patients and families to share stories, ask questions and network with each other. The lunch and learn event will be held in the Children’s Hospital theatre.
Families from Tennessee, Kentucky, Alabama, Georgia, Indiana, Missouri and Ohio come to the clinic and are expected to attend the event.
For Shrader, the event is a great opportunity to meet other families coping with similar disorders.
“Even if we don’t have the same diagnosis, it will be nice to meet face to face with a parent going through similar struggles,” she said. “I also think it will be good for the kids to meet. That will be really important for them to see others like themselves.”
