CJD diagnosis was death sentence for Benedicte's short life

WHEN Francine Delbrel's daughter was born on April 18th, 1972, the French naval officer's wife wept for joy. She named the little girl with black hair and smiling eyes Benedicte blessed by God.

The name seemed to fit: Benedicte was a pretty, mischievous child, spoiled by her parents and two older brothers, popular at school, with a talent for acting.

In the book she dedicated to her dead daughter, For Benedicte, Mrs Delbrel recalls how in the autumn of 1983 her 11-year-old complained that she was being teased because of her small size. "Mamma, the boys in my class call me `gadget' and the teacher calls me `the flea'." The Delbrels' pediatrician recommended growth hormones, already in use in the US.

Francine Delbrel hesitated, but was assured that the medicine was made by the prestigious Pasteur Institute. Benedicte took the injections for three years. "They talk now about fighting dwarfism - as if it justified what they did," Mrs Delbrel told me angrily. "But most of the children were normal, just a little short. If I had been more clear-headed, I would have refused, and Benedicte would be alive."

Sixty French children treated with the hormones have contracted CJD; more than 40 have died already. A thousand others live in fear of the same fate; the disease can lie dormant for decades. When their daughter was dying, the Delbrels learned to their horror how sloppily the growth hormones were made. In theory, the pituitary glands used in the medication were subject to strict criteria - it was forbidden to take them from a person who died of viral infection or dementia. French medical authorities cannot explain why they ignored the medical histories of the dead gland donors.

Hospital morgue attendants received a bonus of £3.61 for each gland they sent to France-Hypophyse, the association which resold the pituitary glands, to the Pasteur Institute. They extracted the glands even from high risk patients who died in the neurology, infectious disease and geriatrics wards.

The growth hormone trade was extremely profitable - in 1984 the Pharmacie Centrale des Hopitaux (PCH), France's main distributor for hospital medication, earned nearly £4 million from the sale of growth hormones. This is probably why the PCH continued to distribute contaminated growth hormones for nearly a year after their use was banned. "They killed our children for their sordid little savings," Mrs Delbrel said. "We didn't think this could happen in our country."

In 1990, four years after she had ceased the hormone treatment, Benedicte Delbrel suffered the first symptoms of CJD.

The 18-year-old, who had been so lively and cheerful, chain-smoked and sobbed in her bed at night. A battery of tests showed no physical ailment. Doctors prescribed anti-depressants. Over the next two years she experienced fainting spells, headaches, double vision, violent back pains, muscle spasms, stomach aches, insomnia.

Then - incredibly - a psychiatrist diagnosed a form of hysteria and recommended that Benedicte be separated from her family. She was over-attached to her parents and was trying to go back to the womb, he said.

In hospital, deprived of all contact with her parents because of the psychiatrist's bogus diagnosis, a desperately sad Benedicte joked one day with a doctor whom she noticed was also short. "You must have been given growth hormones too," she said. "That's when it clicked," Mrs Delbrel recalled. The diagnosis of CJD was a death sentence, but Benedicte was relieved to learn that her problems were not psychiatric. Now she knew what to expect: she would lose the ability to walk and speak. Her death would be slow and painful, and would end in a coma. In January 1993, 60 of her family and friends took Benedicte on a stretcher to Lourdes, to beg the Virgin to heal her, to no effect.

From February 1993, Benedicte could no longer speak, but moaned for hours without being able to describe her pain. Her arms became paralysed, then her jawbone. She vomited day and night. Finally, even her facial muscles were frozen, but her dark, tear-filled eyes could still look into the eyes of the family members who waited by her bedside until her death on May 4th, 1993.

Five doctors have been indicted for involuntary manslaughter in the contaminated hormones case. New indictments on criminal charges are expected after the revelation last week that the hormones were sold after they were known to be contaminated.