At a Salt Lake City, Utah-based Learning and Action Network event organized by HealthInsight, the Quality Improvement Organization for Nevada, New Mexico and Utah, mother and son team Vicki and Kevin Whiting shared with a crowd of more than 150 medical professionals their health care story. After a long journey and a mother finding the heart to use her voice, Kevin’s true diagnosis was discovered, and he received a surgical procedure that saved his life. The Whitings’ story exemplifies how listening is the heart and soul of patient-centered care.
In early 2007, my son Kevin, then 13, began to experience symptoms that were diagnosed as flu-like. By September of that year, Kevin was experiencing rapid weight loss – 20 plus pounds from his already thin frame – and unbearable stomach pain.
For 18 months, we worked furiously to figure out and solve the severe abdominal pain that Kevin named “Burnie.” Kevin told doctors over and over again that the discomfort in his stomach was real; not just everyday pain – extreme, intense pain. Over time Kevin would put on two or three pounds, but then he would have another episode where food would not stay down, and pain would become unbearable.
At times, his intense level of pain would recede enough so that he could return to school for a few days, but he was so weak from the extreme weight loss that he didn’t have much strength to carry on. Over time, his weight plummeted from 90 to 63 pounds, and he was put on a feeding tube to keep him alive.
Our family physician eventually sent Kevin to specialists who diagnosed anorexia and put Kevin on antidepressants and anti-anxiety medication, which pushed him to the brink of suicide. Throughout all of this, keeping food down was difficult for Kevin. We returned constantly to the doctors, tests, the hospital, yet no answers were forthcoming, and Kevin’s suffering, pain and weight loss continued.
Fortunately there were a few doctors who truly listened to Kevin, asked the right questions and ran the necessary tests. The belief of his primary care doctor and a determined surgeon finally led to a definitive diagnosis that, though scary, had a surgical cure.
Kevin was born with a rare intestinal compression superior mesenteric artery (SMA) syndrome that manifests itself during adolescence with what the doctors referred to as “cascading complications.”
We found a gifted surgeon who rerouted Kevin’s intestines from the blockage and his arteries, and reconnected them so that food could pass to the rest of his system. After months of living on a peripherally inserted central catheter (PICC) line for sole-source nutrition, Kevin, for possibly the first time in his life, had an appetite.
From this experience, our family has learned the power of listening, the importance of strength and the necessity of adaptability. Kevin says that listening literally saved his life, and I believe that to be true. Without the enduring, thoughtful individuals that we found in the health care system, we would still be looking for a cure.
Today, Kevin’s smile is bright, and the future is his to grasp. Our family is looking forward to seeing what the next chapter holds for this remarkably resilient young man.
For more information or to order Vicki’s award-winning novel “In Pain We Trust,” visit www.vickiwhiting.com.