Lee Rotbart Koonin died on November 19th. It was her 74th birthday. It may not be listed in Time Magazine as a notable death that week, but who she was may surprise you.
She was the president of her high school sorority and winner of the Miss Talent competition in Washington D.C. in 1950. She met her husband Mike in high school and they married when they both were age 18.
Within four years of their marriage Lee – as everyone knows her – became ill. It did not appear to be a life threatening illness, just a relatively minor surgery. But it changed the direction of her life.
After multiple surgeries for, what was eventually diagnosed as the newly named Crohn’s Disease, Lee dropped to 68 pounds and was starving to death. This led to Lee becoming one of the first patients able to return home from the hospital with Parenteral Nutrition. This is the “total nutrition by vein” that is common in hospitals and at home today.
Total Parenteral Nutrition (TPN) was not common in 1977 when Lee received her catheter or “line” for the delivery of the lifesaving fluid. Due, in part, to her frustration at almost losing her life and having to learn on her own about this technology, Lee decided to not let others be a victim of an information vacuum. She founded the Lifeline Foundation, a consumer advocacy organization, and opened her life and medical history to others in order to get something done, sublimating her own shyness. Newspaper articles were written about the “woman who eats while she sleeps.” Lee was a guest on numerous television interview shows across the country as well as more in-depth 60 Minute type shows and national early morning shows. Her appearance during the first hour of Good Morning America informed untold individuals about the value of TPN and established her as a role model for others. The Time/Life book on Nutrition features Lee in a whole chapter documenting her inspirational life and accomplishments. As an invited speaker, Lee has addressed medical societies, unusual for a layperson, as well as major speeches to specialized groups focusing on parenteral and enteral nutrition at their national conventions.
When Catastrophic Insurance was being considered by Congress in 1981, her testimony to the House Health Subcommittee was well received. Clearly her speech impacted the future of employment by addressing that people who were forced to be declared “disabled” in order to finance the substantial cost of home parenteral nutrition, were actually “enabled” as a result of the nutrition. Lee encouraged legislation to protect these differently abled individuals to allow them to work and yet retain benefits under catastrophic insurance. She was one of the earliest individuals who identified the problems of lifetime caps to health insurance, and most importantly that after beginning TPN, most individuals with an accommodation could begin or return to being fully functioning and employable workers. Her words became the foundation for the Americans With Disabilities Act.
Lee really did not want to be a medical trailblazer. She just wanted to be a wife to Marshall and mother to the daughter she adored, Susan. You know, the simple life. She was an accomplished writer and had completed 75 percent of a book about her life and triumphs as well as short “thoughts” that resembled good Hallmark cards.
She often said, “Life would be perfect if only the VCR worked,” implying that the rest of her life was actually perfection despite how others may have viewed her challenges. As a genteel woman, she would submit to all types of medical examinations, some quite personal, but would draw the line at sticking out her tongue because, “a lady never sticks out her tongue.” As Lee’s final hospitalization was concluding and it was relatively clear that her options for recovery were remote, her concerns were completely with her family. In a quiet voice, she told her daughter on her last Friday, “this is breaking my heart.” There are a lot of broken hearts right now.
Lee Koonin was a true champion; a winner after going through absolute hell and by her unbelievable tenacity and desire for life obtained a better result, became a productive member of society, role model to thousands and advocate who changed others lives and advanced medical science. Her impact on the world may not ever truly be known, but as one medical professional said to a large group of those fed parenterally, “Lee Koonin is the reason you have survived and are all here today.” Her accomplishments and talents and humor could fill several more pages, but you get the idea of who she was.
A wonderful, thoughtful, giving woman was lost this week, but her legacy will carry on for decades. Your survival, or that of a loved one may have occurred because of this little known and not well-publicized notable death.
Written by Marshall Koonin, her husband and her daughter Susan
