Intracranial Bleeding in Children with Hemophilia: Cendie Wood’s Family Struggle

Anxiety and apprehension within a family that has experienced an intracranial bleed in their child is understandable. Cendie Wood’s guest blog on the Hemophilia Society of Colorado blog (http://cohemo.blogspot.com/2011/02/story-of-survival-cendie-woods-family.html) documents the dilemma facing parents and grandparents of a child with severe hemophilia. Head bleeds in hemophilia may occur outside the skull such as a scalp hematoma, or within the skull, an intracranial hemorrhage. Bleeding into the brain is one of the leading causes of death in hemophilia. The lifetime risk of intracranial hemorrhage in severe hemophilia before AHF replacement therapy became available, has been estimated at 2-10% with a mortality rate of 30%. One of the earliest reports of a head bleed was in Queen Victoria’s eighth child, Leopold. He died at age 31 in 1884 after he struck his head in a fall in Cannes, France.

Prophylactic infusions of AHF are intended to minimize the frequency of spontaneous intracranial hemorrhages in small children, such as Cendie Wood’s grandson, Brett, who have hemophilia. However, the instance will not be totally eliminated for intracranial hemorrhages are known to occur in persons who do not have a deficiency of clotting factors.  Hopefully her grandson, who will soon be three years of age, will be free of intracranial bleeds with regular AHF prophylactic replacement.

Recurrences of intracranial do occur in severe hemophilia. They may be located subdurally or intracerebrally. In my book, Doctor Guilt?, Roger a five-year-old boy who had severe hemophilia with an intracerebral hemorrhage is described. He was one of the first children to survive after receiving cryoprecipitate in 1965 while undergoing cranial surgery. The introduction of replacement therapy with cryoprecipitate in 1964 by Dr. Judith Pool at Stanford University was a remarkable event allowing survival of  head bleeds in hemophilia. Roger’s head bleed recurred and he underwent head surgery a second time. When his intracranial bleed recurred a third and a fourth time he was not returned to surgery but did receive cryoprecipitate AHF replacement therapy that allowed him to survive to adulthood.

With the support of the excellent and experienced hemophilia care in Denver by Doctor Marilyn Manco-Johnson and the Hemophilia Treatment Center staff, you should convert your energy from agony to optimism for a good life for your grandson. Good luck and enjoy your grandson, whom I hope will grow to become a strong, handsome boy to make his grandmother proud of him.

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When patients die, who’s to blame?

I was a farm boy from Iowa. While I was serving in Korea as a rifleman, I realized that I was eligible for the G.I. Bill, and decided that I would become a doctor.

After completing medical training, I was assigned as a temporary substitute for another doctor in a clinic that provided medical care for boys that had hemophilia.  The position developed into a full time appointment.

Hemophilia was a great medical disorder to treat as a physician.  The doctor could relieve suffering, prevent disability and prolong life with a new medicine that became available. It was like a magic medicine.  A guiding principle was to avoid causing harm to patients.

The magic new medicine unknowingly harbored lethal viruses: hepatitis and HIV. A new disease, AIDS emerged as aresult of infection from polluted medicine.   The patients that I treated developed liver disease, including cancer of the liver and AIDS. Ninety patients that I cared for died.

I felt devastated.  I felt guilty of causing harm. To the families they left behind to mourn, I had to say that I am sorry for causing harm.  The journey through the life of a boy I cared for from nine months of age–until he died at age 17 years–is recounted in Dr. Guilt?.  Some of the other persons he met are also described in this account.

When patients die, who's to blame?

Why I wrote this book:

AIDS could have been prevented in hemophilia. The families that lost a son or husband or brother or father blame the drug companies that made the medicine. They maintain that the drug companies sacrificed safety for profitability.  But the final responsibility of prescribing medicine rests with the doctor, not the drug company that made the medicine.

This book describes hemophilia, and the origin of AIDS. It discusses capitalism and free marketing in a society without cost controls.  Accountability for the deaths from AIDS is discussed.  It stresses the need for critical thinking and consideration for the hazards of medical treatment compared with the benefits. Sometimes when good events occur, bad things happen.

The impact of human activities is not always apparent at the time of their occurrence.   But most of all this book was written to tell the families that as a doctor, I and all the other doctors are sorry for causing harm.  We told the persons in this book to take the medicine and they would be relieved of suffering and live to become old men. Instead, they died from the medicine. If we were not guilty, we were certainly wrong.

After the patients died, I had bad dreams for several years.  I dreamed about those guys who died. Writing this book has helped me to overcome my sense of guilt.  But the persons who died were innocent.  Their story needs to be told so that they are not forgotten and the conditions that allowed this terrible tragedy to occur are never repeated.

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About the Book

A boy named Brent was relieved from suffering and threat of death from hemophilia when a magic new medicine was prescribed to stop his recurrent bleeding. However the medicine he received was contaminated with HIV which caused his death at age seventeen. Who is accountable for his tragic death and the death of thousands of others from a medicine that was intended to protect him rather than claim his life? Were the producers of the medicines guilty of sacrificing safety for profitabiltiy? Or were the doctors who prescribed the medicine guilty of causing harm to their patients? Could AIDS have been prevented if government regulations had been in place.

The successful production of new medicines is driven by the spirit of capitalism resulting in great benfits to society. But because of human nature, capitalism requires regulations to prevent greed. AIDS is a man-made disease which occured when an animal virus, SIV, jumped a species to become HIV, the result of the impact of human behavior. Who is accountable for the tragedy of AIDS in HIV infected persons with hemophilia? Whenever a new treatment becomes available the benefits must be compared with the hazzards of treament.

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