When every moment matters
For Sandhya and Srinivasa Vunnam, time spent with their son Ritesh is precious. Every second is cherished because the 3-year-old is living with a rare, life-threatening disease that affects his heart and lungs. The Vunnams put their faith in the doctors and nurses at Children’s and strive to make every moment matter.
Ritesh's illness started more than 8,000 miles away from home in Atlanta while visiting family in India in November 2010. Thinking Ritesh had a stomach bug, Sandhya took the young boy to a doctor who prescribed antibiotics.
Upon their return to Atlanta, Ritesh’s symptoms worsened. He was still vomiting at least once a day. “He was really breathing heavily through his mouth…he seemed so tired. He usually likes to play, and he wasn’t playing at all,” Sandhya said. Ritesh’s pediatrician ordered a chest X-ray, which showed an enlarged heart. The pediatrician then referred Ritesh to Children’s.
Within Sandhya’s quiet voice, the strength of a fiercely protective mother is evident. “It was terrifying. He was just 3 years old,” she said.
That inital visit to Children's turned into a six-week stay with a diagnosis of pulmonary hypertension. The condition causes abnormally high blood pressure in the arteries of the lungs and forces the right side of the heart to work harder than normal. Ritesh’s little heart was failing, and his parents were devastated. In the Cardiac Intensive Care Unit (CICU), doctors began treating the pulmonary hypertension. Though he initially showed improvement, he later took a turn for the worse.
After more tests, doctors determined Ritesh had pulmonary venoocclusive disease, an extremely rare form of high blood pressure in the lung area that caused his pulmonary hypertension.
“At the very moment they started talking about Ritesh’s condition, I started crying. I knew that it was much worse than pulmonary hypertension,” Sandhya said.
There is no cure for Ritesh’s disease, and the prognosis is generally poor. But the Vunnams are ensuring Ritesh gets the care he needs through the Children’s Pediatric Pulmonary Hypertension Program, led by Usama Kanaan, M.D. Because pulmonary hypertension can affect so many different systems in the body, Ritesh’s team includes other specialists throughout Children’s to make things as convenient as possible for his family.
“The doctors are just incredible. They have done everything to keep Ritesh safe. They are always available to us,” Sandhya said. “Dr. Kanaan even gave us his personal cell number. He’s always there when we have questions.”
Ritesh’s disease is under control—for now. He visits the Pulmonary Hypertension Clinic monthly for treatment and checkups. Pulmonary veno-occlusive disease is serious and progressive, but Dr. Kanaan believes that current research could lead to new hope for Ritesh. He also credits the Vunnams for their positive attitudes.
“Ritesh and his family have been remarkable throughout this entire process. They are truly partners in his care,” he said. “Ritesh is almost always smiling and upbeat despite his medical challenges. We are optimistic that we will be able to continue to help him beat the odds of this progressive disease.”