Blood Will Tell

By Peter Stoler

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.

Once they knew the diagnosis, the Massies, like most parents in their situation, watched anxiously as their son bumped into furniture. (Suzanne remembers realizing, after she had swathed their entire apartment, that there was no way to pad the whole world.) Inevitably, the growing boy fell and suffered the agonies of internal bleeding and of constantly necessary blood transfusions. The parents blamed themselves whenever he was hurt. At times, the burden became unbearable. Robert Massie confesses how relieved he felt when his job (at Newsweek and later the Saturday Evening Post) legitimately took him away from home, freeing him briefly from his continuing responsibility. Suzanne admits that she once considered suicide and writes: "A person living with hemophilia can become paralyzed with fright, like a rat in a maze who has met with an electric shock at every innocent-looking exit until finally he simply turns frantically in circles, afraid to try any more doors."

Swallowed Pride. The Massies display touching and deep appreciation for those who helped them escape from this paralysis--among them the doctor who defied tradition to teach them how to handle Bobby's transfusions at home and the calm Russian princess, now living in a New York suburb, who had played as a child with her hemophiliac cousin, the doomed Czarevitch Alexis. But the book does not mince words about the American medical system, which tends to hinder rather than help hemophiliacs. The Massies' anger is understandable. American blood bankers, by and large, have done little to bring down the cost of the blood fractions that hemophiliacs must have. The American Red Cross, which collects 40% of all the blood in the U.S., has in fact lately agreed to turn over some of its blood to the Hyland Division of Baxter Laboratories, a commercial concern that charges twice as much for the hemophiliac fractions as some doctors say it should cost. "I understand your concern," a company official told Robert Massie, "but my sales people are always against lowering prices. Remember, I have to think of theirs too."

Bobby Massie is more fortunate than most hemophiliacs. His parents were not wealthy, but they were determined. They swallowed their pride and ran campaigns to collect the blood he needed, pleading with friends, relatives and even strangers for donations of the vital fluid. (The problem, writes Robert, was not in being grateful, but in having to be grateful: "Nobody likes to beg for charity. And begging for blood is just as hard, maybe harder, than begging for money.") They concealed their fears and sent him to school, then hid their hurt when his classmates called him "leather legs" because he wore padded braces to support his swollen knees.

The result of their efforts--and courage--is obvious. Young Massie, now 18, is a freshman at Princeton. The disease has permanently damaged his knees, and he must use an electric cart to get around at college. But he has served as an aide to Scoop Jackson in the Senate, learned to fly, swims more than 1,500 yds. a day in college, working out regularly with the swimming team. Journey makes hauntingly clear that Bobby's spirit is intact. In a post script the boy rejects the suggestion, sometimes made to him, that his or deal has been a blessing in disguise.

But he writes, "If having vanquished braces, bleeding, pain, self-conscious ness, boredom, and depression, I have not added in any way to my appreciation of this life that has been given me, then that indeed would be a misfortune to be pitied." * Peter Stoler

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