“We don’t want anyone else to lose a child as we did,” says Deb McMillan. “That is why this video is so important.”
Deb never expected to become a crusader. She was a former teacher and mother of four, enjoying life in suburban Omaha until she lost one son, and very nearly the other, to the same catastrophic medical condition.
Transformed by tragedy, Deb and her family have joined with Methodist Hospital to tell this story.
Deb’s younger son, Tyler Kahle, was just 19 when he died Oct. 7, 2002, of an undetected rupture inside his chest, a tearing of the aorta called thoracic aortic dissection. At the time, Tyler’s care providers believed he was too young for this to occur.
What Methodist Hospital learned from Tyler’s death, including what other health care institutions can do to prevent a similar tragedy, is the subject of the video “Aortic Dissection at Any Age: The Tyler Kahle Story.”
The video, produced by Methodist Hospital in cooperation with Tyler’s family, is designed to raise public awareness and educate medical professionals. Through the video, Methodist shares lessons learned from Tyler’s death — lessons that are saving lives.
Family photo albums show Tyler as a boy in constant motion, a young man in love with life. Always a daredevil, Tyler grew up cannon-balling off high dives, shimmying up trees and testing the limits of his considerable athletic abilities with rollerblading and other X Game-style sports.
At 19, Tyler was a Metro Community College freshman contemplating a career in computer science or Web design. His future seemed bright.
Focusing on cherished memories of her son, Deb explains, “We learned so much from Tyler. He believed there was always time for fun, and we learned not to take even five minutes for granted.”
Tyler’s sudden death, following treatment for what was believed to be a respiratory problem, stunned and devastated his family. Confirmation that aortic dissection was the cause of death only intensified the family’s anguish.
Four years earlier, Tyler’s father, Terry Kahle of Atlanta, had suffered a similar dissection and survived the difficult surgical repair. Tyler might have been saved if his condition had been recognized.
Tyler’s story was highlighted in the Wall Street Journal’s 2004 Pulitzer Prize-winning series, “Deadly Discrepancy: New Light on Aortic Aneurysms.” The series described the potentially lethal gap between what medical science has learned and what front-line health care providers may know about aortic disease.
|
The Wall Street Journal series outlined how this knowledge gap contributed to what may be tens of thousands of deaths from aortic dissection, including the deaths of “Rent” playwright Jonathan Larson in 1996 and actor John Ritter in 2003.
At one time, aortic disease seemed virtually undetectable and untreatable. Early symptoms of weakness in the aortic wall rarely appear to forewarn of what may become a sudden, fatal failure of this major blood vessel.
The primary types of aortic defects, which may occur independently or in succession, are aneurysm and dissection. An aneurysm is a weakened section of the vessel that gradually enlarges in diameter, sometimes ballooning into a life-threatening rupture or dissection. Dissection refers to a tear in the lining of the aorta that allows blood to flow between the layers of the aorta, forcing them apart. Depending upon the location of the aneurysm or dissection, symptoms may mimic heart attack, flu, severe muscle pain or other ailments (see sidebar).
The development of advanced imaging tools — the echocardiogram, CT scan and MRI — finally gave physicians the ability to see aortic aneurysms and dissections within the body. However, consensus on when to use these tools to examine the aorta has evolved slowly.
Misperceptions have persisted that aortic problems occur only in older people, typically males over 50, with the highest incidence among those who also smoke, have high blood pressure or other cardiovascular or chronic disease. The likelihood of aortic disease in seemingly healthy young people, like Tyler, has been tragically underestimated.
While awareness has grown slowly of additional risk factors for aortic disease, especially the connective tissue disorder called Marfan syndrome (see sidebar), DNA studies are offering a more complete picture of who is at risk. Medical research has established that for people with a genetic predisposition, aortic aneurysm and dissection can occur at any age.
The recognized authority in the field is Dianna Milewicz, MD, PhD, director of medical genetics for the University of Texas Medical School at Houston, and director of the Specialized Center for Clinically Oriented Research in Thoracic Aortic Aneurysms and Dissections funded by the National Heart, Lung and Blood Institute. Dr. Milewicz contributed her expertise to the Wall Street Journal’s award-winning series and participated in Methodist Hospital’s educational video about Tyler and aortic dissection.
Dr. Milewicz’s work has helped establish that about 20 percent of thoracic aneurysms and dissections are genetic, and that the earlier in life aneurysm occurs, the more likely it is to be genetically based. Her team has studied more than 3,500 individuals from 400 extended families affected by what is called familial thoracic aneurysm and dissection syndrome, including the Kahle family.
Dr. Milewicz
|
“From my research, I know that physicians do not understand that there is a genetic basis to this disease,” Dr. Milewicz explains. “Physicians do not want to miss an acute aortic dissection. No physician wants to send somebody home to die.”
Story continues on page 2.
Page 1 | 2 |
