A boy is born with no hands; a girl with one foot. A British professor believes that these children are victims of Chorionic Villi Sampling – a “search and destroy” prenatal test.
A prenatal test introduced about 10 years ago, and taken by women to ensure that their babies were safe from Down Syndrome and other genetic abnormalities, is being blamed for birth defects in dozens of children in Britain, and hundreds world-wide.
Leading doctors believe that chorionic villi sampling (CVS) is responsible for the damage done to preborn babies who are born without hands, feet, and tongues. The main headline in one of the world’s leading newspapers (The Sunday Times, March 12, 1995) reads: “Tests on pregnant women causes wave of birth defects.” In the article, Professor Charles Rodeck of University College Hospital, London (England) is quoted as saying that the discovery of the birth defects had “caused great consternation among obstetricians.” Professor K. Nicolaides of King’s College Hospital, London, warns that “a disaster” is emerging.
The chorion is an extra-embryonic membrane. The word “villi” comes from the Latin villus meaning “tuft of hair.” Chorionic villi are tiny branching projections – like tendrils – on the surface of the chorion. The villi establish a connection with the lining of the uterus, supplying the baby with food and oxygen in the critical early stages of development, and eventually form the placenta.
CVS is a biopsy of these villi, which are identical in genetic makeup with the body of the embryo. Guided by scenography, a narrow instrument is passed through the cervix – occasionally through the abdomen – and a tiny piece of tissue of the villi is removed. By analysis of this sample scientists can learn the sex of the baby, and whether the baby has Down Syndrome, cystic fibrosis or other genetic diseases. The sample cannot disclose non-genetic anomalies such as spina bifida.
The main use of the test (it would be truer to say the only purpose of the test) is to identify abnormalities at an early stage and provide the option for an early abortion.
Extent of the disaster
According to reports from the Centre for Disease Control, a U.S. government agency, about 500 children of the 500,000 tested by CVS world side have been damaged. That is one in a thousand. The statistics for Britain show a higher risk; 40 damaged babies out of 30,000, or one in 750.
One of the forty is a five-year-old boy, Edward Cropper, who lives in Oxford. When he was born, his mother, Dr. Katherine Cropper, saw that he had no hands, and only one foot. She says: “The nurse suggested that I try to feed him. I could feel immediately that although he had a hungry attitude, he wasn’t sucking at all. I put my finger into his mouth and I could see he didn’t have a tongue.” Luckily, Edward has learned to cope with his disabilities. The news report continues: “Edward, who excels at art, Lego building, and climbing trees, is philosophical about his problem. I’m me, and I’m not anyone else, so that’s that. Tough.”
Another child, less seriously affected, is two-year-old Rebecca Cornes. Rebecca lost most of one foot and several fingertips following CVS at eleven weeks. Rebecca, too, is coping: she loves to dance.
The evidence shows that the earlier the CVS test, e.g., at seven weeks, the more severe the limb defects. But there are suspicions that the damage might be more extensive than at first thought. Professor Rodeck says that, in addition to limb defects, CVS “could have some effect on the brain which we are not in a position to detect.” Further, CVS is thought to have caused a rare syndrome affecting the face, as well as the limbs. The syndrome, which normally affects one child in 175,000 has been found to be 100 times more common in the Oxford area among children whose mothers had the CVS test between eight and nine-and-a-half weeks.
One paragraph in The Sunday Times article is disturbing for a number of reasons. “American researchers who stimulated the effect of clumsy CVS on fetuses before abortion, filmed the results with tiny cameras in the womb and discovered that lesions appeared within minutes on the limbs and head. Significant haemorrhaging or interruption of blood supply is thought to harm a baby’s development with most serious damage likely before it is fully formed around nine weeks of pregnancy.”
Reaction in the Medical Profession
There is a split in medical circles. One side claims that the risks of CVS are not proved, and that, in any case the numbers are small. The other side believes that the reported number of damaged children is too low. Doctors did not make the connection between CVS and abnormalities, and so did not make reports.
Professor Nicholaides is campaigning for changes in the guidelines for CVS testing. He recommends that tests should not be done before eleven weeks, and even then by highly skilled operators. The World Health Organization suggests a minimum of 200 tests are needed to gain expertise, but operators are doing the tests, without supervision, after only 30 tests.
There is concern in obstetric circles that women undergoing CVS are not warned of possible birth defects. A survey of 18 hospitals in Britain showed that two out of every three consultants chose not to mention the dangers. The excuse was that it would cause unnecessary anxiety to mention a risk of one in a thousand.
It is disquieting to note that, despite the “great consternation among obstetricians”
(a) there is no professional mechanism in place to enforce a rule on training for CVS, and
(b) there is no consensus on how much patients should be told. Therefore, it is a case of “Women, Beware.”