JOURNEY by ROBERT MASSIE and SUZANNE MASSIE 417 pages. Knopf. $8.95.
Of the several million people round the world who read Robert Massie's Nicholas and Alexandra, few failed to be impressed by the author's empathetic handling of hemophilia. The disease, characterized by uncontrolled bleeding, threatened the life of the young Czarevitch, made the lives of his father and mother into a nightmare, and helped lead to the fall of the Romanov family. By dealing with the Czar and Czarina as distraught parents, the book transformed them from foolish pawns of history into figures of personal tragedy.
No one who reads Journey, which Massie has just written with his wife Suzanne, is likely to wonder at the source of Massie's sensitivity. In 1957, the Massies took their six-month-old son Bobby to a New York hospital for tests to determine why he bruised so easily and bled so long. They waited for hours while uncommunicative doctors and nurses examined and drew blood from the screaming, terrified baby. Finally, a doctor emerged and coldly offered them a dreadful diagnosis and an ambiguous afterthought. "The child has classical hemophilia," he told them. "There will be compensations, you may be sure."
Enduring Courage. The compensations have been a long time in coming. Hemophilia is a devastating and in many ways ill-understood disease. Those afflicted by it usually have to fight it on their own and with inadequate weapons. Journey is the story of the Massies' struggle, which so far has been successful. The chapters written by Robert tend to deal with technical details. Suzanne concentrates on her personal anguish and the years of caring for Bobby. If she sometimes seems to overwrite, the book proves how thoroughly she has earned the right to do so. Her descriptions of the emotional and physiological effects of hemophilia on exhausted parents, as well as children, are heartrending. Its portrait of Bobby Massie's enduring courage and the decency and devotion of those who helped him makes Journey a remarkable human document. Beyond that, the Massies' analysis of how the disease is handled and mishandled by American medicine is a model of reportorial precision and reformist zeal.
Hemophilia is thought of as a disease of the monarchy because England's Queen Victoria, a carrier, passed the trait along to some of her children and had two granddaughters marry respectively a Romanov and Spanish Habsburg. Yet the disease is anything but royal and far from rare. It affects one out of every 20,000 males and can strike anyone—even those with no previous hemophilia history—who inherits the genetic defect preventing the production of certain blood fractions involved in the clotting process. Hemophiliacs do not bleed more easily than others; they merely bleed longer. They do not die from pinpricks or cut fingers. What hemophiliacs fear more than knives or scissors are the internal hemorrhages that can cripple and destroy joints, ruin the brain, or, if uncontrolled, kill. More than half of all hemophiliacs die before the age of five. Even with regular transfusions of the missing fractions, only 11% live to age 21.