Organ network needs to keep the voice of children’s advocates



We enter the intensive care unit to examine our 8-month-old patient. Tubes and wiring surround her body like a spider’s web; her mother hovers to place a pink bow in her meticulously combed hair. Mira (not her real name) has biliary atresia, a condition that prevents her liver from properly ridding the body of toxins and protecting her from bleeding.

She waits for a liver transplant, and every day we worry: that she will die from an infection; that her other organs will start to fail; that every day she is supported by machines will affect her ability to live the life her parents have dreamed for her. We each, in our own way, say a silent prayer entreating the universe to let us save this child’s life.

A few states away, a child has suddenly died. His parents, in their unimaginable grief, make the ultimate gift of life by donating his organs. Whose lives should they save? Who decides where they go?

Human ‘knockouts’ and rare diseases

In the U.S., a rare disease is defined as any disease that affects fewer than 200,000 people in the country, or about 1 in 1,500. They're a lot more common than we think. Continue reading

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About the authors
Evelyn K. Hsu, M.D., is medical director of liver transplant at Seattle Children’s Hospital and associate professor of pediatrics at the University of Washington School of Medicine. Jorge D. Reyes, M.D., is chief of transplantation surgery at the University of Washington Medical Center and professor of surgery at the University of Washington School of Medicine.