Seattle Culture

Family Affair

Learning about how to handle type 1 diabetes was a whole-family job

By Michelle Tolfa January 9, 2015

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Group Health family physician Stephen Tarnoff got a dose of life on the other side
of the stethoscope when his son was diagnosed with type 1 diabetes

Charlie Tarnoff was 5 years old, on the verge of entering kindergarten, when his family physician father, Stephen, began to suspect there was something wrong, because of symptoms his son was exhibiting, such as frequent urination, unexpected weight loss and thirst. Stephen Tarnoff took Charlie to a specialist to confirm his fear: type 1 diabetes. Not to be confused with type 2 diabetes, which is usually diagnosed later in life and often caused by problems associated with obesity, type 1 is a chronic, lifelong condition characterized by a lack of insulin in the bloodstream, which prevents blood sugar, in the form of glucose, from entering the body’s cells. According to the American Diabetes Association, more than 18,000 youths, or 22 percent, were diagnosed with type 1 diabetes as of 2008–2009 (the last years for which data is available). If not monitored and treated regularly, the condition can prove fatal.

Tarnoff, chief medical executive for Group Health and president of Group Health Physicians, did his best to mask his well-founded anxiety when confronted with the myriad implications of his son’s life-changing diagnosis. “I wanted to be positive, so I tried not to show the full extent of my concern,” comments Tarnoff, who realized that his wife and son would look to his medical expertise for guidance. “I really had to compartmentalize my feelings.”

The chronic condition, a term Tarnoff prefers over “disease,” is very high maintenance and, as he and his wife, Suzanne, learned, involves the coordinated care of numerous health professionals. Charlie’s care team was composed of a diabetes specialist, a nutritionist, an endocrinologist, a pediatrician and a nurse practitioner who specialized solely in operating the highly technical insulin pump.

The ensuing years were filled with countless trips to doctors’ offices, and Tarnoff began to understand the full extent of what coordinating the care for this complicated, multifaceted condition involved. The responsibilities of monitoring Charlie’s blood glucose levels and administering treatment most often fell to his wife, a freelance editor, who received a thorough education on the disease early on, quickly learning a slew of terminology, as well as how to recognize signs of low blood sugar, how to effectively stabilize Charlie’s glucose levels and what to do about situations in which metabolic demands vary, such as during physical activity or sports. “Any parent with a type 1 [child] knows that you can never let the blood sugar get too low,” says Tarnoff, “and if you don’t get the dosage levels just right, you can overdose on your insulin.”

The Tarnoff family’s experience has influenced Tarnoff’s relationships with patients as well as colleagues and staff. He puts more thought into how he communicates with specialists when caring for the same patients, and how he utilizes his nurses; he also understands firsthand how important it is for immediate family to understand a particular disease—especially chronic conditions—and to receive adequate training so they can feel comfortable helping to treat it. He does everything he can to help educate caretakers, either personally or by referring them to other health care professionals. “So much care happens outside of the doctor’s office,” emphasizes Tarnoff.

Having found himself carefully balancing his roles as both father and doctor, Tarnoff often had to resist the temptation to take over the reins. But he understood how important the learning process was for both his wife and his son, and ultimately, he says, “The goal was to get Charlie to a point where he could manage the disease himself, without the help of his parents.” Charlie is now 20 years old and recently enjoyed a summer traveling abroad sans parental supervision—all a result of being fully capable of managing his condition. +

 

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