During a routine pregnancy ultrasound, Meghan and Bart said the doctor noticed one of their baby’s legs was swollen but could not yet identify the cause. This was their first child, so the normal uncertainty they felt as new parents was amplified. Shortly after being born, their son Owen was diagnosed with Klippel-Trenaunay Syndrome (KTS), a rare condition impacting the development of blood vessels, muscles and bones. In Owen’s case, these abnormalities were concentrated in his left leg, causing it to grow much larger than the other. There is no cure for KTS, but pediatric specialists at Arkansas Children’s Hospital can help treat symptoms and prevent complications like chronic pain, misaligned hips or blood clots.
Owen was six months old when Dr. Gresham Richter, chief of pediatric otolaryngology at Arkansas Children’s, put together a team of experts to begin treatment. Klippel-Trenaunay Syndrome impacts many body systems simultaneously, which is why the team includes specialists with different areas of expertise. Owen’s treatments have included injecting medicine directly into his blood vessels to shrink vessels that had grown too large (sclerotherapy), surgery to remove clotted blood vessels and medicine to help manage the pain and other issues caused by KTS. Owen’s parents are often present during the team meetings where treatments are discussed, and his father said watching the collaboration in action has “been a wonderful experience.”
As Owen got older, a psychologist was added to the team to help him process the emotions of being a young person whose leg looks different than most of his peers and whose abilities are impacted by KTS. His mother said, “It’s nice to know that they’re not thinking just thinking medically about him, but how can they help as the full picture and bring in other resources to join our team. They have done an excellent job guiding us as parents through this journey in taking care of Owen.” Owen’s team at Arkansas Children’s is committed to caring for him and supporting his family as his body continues to grow and develop throughout adolescence and into young adulthood.
Thanks to the care he’s received at Arkansas Children’s, Owen, like many children his age, gets to build forts in the backyard, play with everything from frogs to lightsabers, go fishing and even play baseball.
Read more about ongoing Klippel-Trenaunay Syndrome research that will help Owen and others like him.
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The characteristics of this syndrome are a mixed venous-lymphatic malformation usually involving the extremities. There is usually a port wine like stain on the affected limb and there is usually a difference in size between the affected and nonaffected limb, the affected one being larger.