I Don't Want to Have a Deformed Child!

This is one mother's story:

"Ever since I became the mother of a deformed child, ever since it was pulled from my body, my nerves have been like hanging drops of water, falling one by one," Mademoiselle magazine editor Chin Huei-chu, her every word full of sorrow.

"Just looking at his hands is unbearable. They're not like normal hands--the wrists hang limply, with the wristbone bent outwards. How is such a hand supposed to hold things? And they say his hands are in much better shape than his legs."

During the first month after the birth she focused on strengthening his hands. "Forcing his wrists straight made him whimper and struggle. Looking at his face, I'd wonder, 'why were you born, just to suffer all this pain? Why did we have to bring such a difficult life into the world?'"

Some people say that having a child is like drawing lots. No one can say when they will draw the short straw and have a deformed child.

The change of seasons is always the most difficult time for the people at St. Anne's House, a hospice for severely retarded children in Tienmu. A few years ago, within a two month period 16 children died, victims of mongolism (Down's syndrome), microcephalus, and hydrocephalus. Presently there are 74 children at the house; how many other children are being denied such care is unknown.

Many people are beginning to worry that the number of children born with deformities is on the rise. "This is not necessarily true," says one doctor. "Before the development of modern medicine no one knew the cause of a stillbirth or an infant death; today both could be recognized as the result of birth defects." The number of birth defects has not increased; nor has it decreased. Sighs one doctor: "it appears that advances in medical science have been offset completely by increases in environmental pollution."

Everyone agrees that having a child is a difficult experience. Besides having to bear discomfort and physiological changes during pregnancy, a woman must face many uncertainties. Says another doctor: "It's as if the child were in a black bag--no one can be sure about its feelings, reactions, or growth."

And at the moment of birth, a mother's first question is not "is it a boy or a girl?" but "is my baby normal?" Unfortunately, sometimes the answer is no. This was especially true in the past, when doctors were limited to treating the pregnant women's problems. Even now, despite advances in science, many problems in detecting birth defects remain.

According to statistics, 25 of every 1,000 babies born on Taiwan have congenital birth defects. This amounts at present to about 100,000 people.

There are two types of congenital birth defects: major and minor. The former category includes congenital heart disease (CHD), cleft palate, spina bifida, defects of the limbs, Siamese twins, etc.

Minor birth defects include warts, large birthmarks, crooked fingers, etc.

Minor birth defects can often be treated, giving the child a chance to lead a normal life. Major birth defects, on the other hand, may be fatal.

Most birth defects, about five to eight per thousand, are major. They are the second leading cause of infant death in the ROC, responsible for 1,118 deaths in 1983. Of these deaths, 685 were the result of congenital heart disease.

What is the cause of birth defects? Presently, most of the time the cause is unknown. It is clear, however, that the two major factors involved are heredity and the environment. Hereditary factors include chromosome abnormalities and genetic defects. Generally speaking, the rate of chromosome abnormality is proportional to the pregnant woman's age. For example, a woman over forty has a 40 times greater chance of having a child with Down's syndrome than does a woman in her twenties.

Genetic defects, the result of changes in the genetic material of the chromosomes themselves, can be passed on generation by generation, or may skip generations. Microcephalus and muscular dystrophy are examples of such genetic defects.

Environmental factors include drugs, radiation, infection, and chemicals. The effect of drugs on a fetus is greatest during the first trimester of pregnancy, during the period of the fetus' formation. Drugs to combat cancer and epilepsy have been proven to cause birth defects.

Radiation is a type of high energy wave which can cause cell damage. The high incidence of leukemia among children born after the Hiroshima and Nagasaki bombings is a testimony to radiation's affects on unborn children.

Another worrisome factor is industrial pollution. An example is the pollution of Japanese fishing waters with mercury, which, when ingested by pregnant women, caused cerebral palsy in their children. Women who work in chemical factories and hospitals, due to their frequent contact with chemicals, are especially prone to miscarriage or giving birth to deformed children.

Can emotions influence the growing fetus? "Certainly," answers professor Wu Kuang-tung, director of general medicine at National Yang Ming Medical College. "Nervousness or anxiety can influence hormone production and changes, which in turn can influence the baby's formation and growth."

With such difficulties, how can one avoid giving birth to a deformed child? Prevention is a matter of routine examinations before marriage, before pregnancy, and before giving birth. "Before marriage both partners should have a physical test. If the results indicate the possibility of passing on a defect, they should give up the idea of having children," says Dr. Wu. Before pregnancy, a woman should make sure she is free of disease, especially of such diseases as German measles, which is the cause of many birth defects such as CHD, deafness, and mental retardation. In addition, women should undergo a pregnancy test before receiving X-rays or having surgery.

During pregnancy a woman must be especially careful about her diet, working and living environment, and general health--not smoking cigarettes, for example. Regular checkups are also important. If birth defects are detected in the fetus in the early stages of pregnancy, the pregnancy can be terminated, thereby preventing a tragedy later on.

Methods of early detection include fetal blood sampling, amniocentesis, chorionic villi sampling, DNA restriction endonuclease analysis, and ultrasound examination. Of these methods, ultrasound is the most convenient and most broadly used. "Ultrasound is like a third eye," explains Dr. Hsieh Feng-chou of National Taiwan University Hospital. Many diseases are hard to treat because they can't be "seen." Ultrasound can determine which week the pregnancy is in, the position and shape of the fetus, as well as whether the fetus has external defects or internal organ abnormalities. Treatable defects can then be cured with the appropriate drugs.

Amniocetesis covers ultrasound's "blindspots," namely chromosomal and genetic defects. The procedure involves drawing out small amounts of amniotic fluid through a needle. This fluid contains fetal cell tissue, enabling an analysis of its genetic material. Although some people are suspicious of the safety of this procedure, Dr. Hsieh stresses that ultrasound is used to guide the needle to the correct location. Amniocentesis is most effective during the 16th to 18th weeks of pregnancy.

Chorionic villi sampling, DNA restriction endonuclease analysis, and fetal blood sampling are all recently developed techniques. Each has its own advantages; for example, fetal blood sampling enables direct analysis of the fetus' blood without requiring cell cultures. Yet all of them remain more or less experimental, and are not used nearly as often as the first two techniques.

With so many examination methods available, which should one choose? And should every pregnant woman be examined? The most widely used method is ultrasound; yet many doctors are not capable of using it to make a detailed examination, and its cost--around NT$1000, or about US$25--makes it an economic burden for most patients. "Different doctors will 'read' different results from an ultrasound examination," says Dr. Hsieh, who is also Secretary-General of the Society of Ultrasound in Medicine, ROC A doctor with insufficient training may not be able to interpret everything the examination reveals; or because he is inexperienced--or busy--may not make a careful enough examination. Therefore Dr. Hsieh recommends that one go only to a doctor certified in the use of ultrasound.

What if a defect in the fetus is not discovered until after the 24th week? "That is a tough question" says NTU Hospital pediatrician Wang Tso-jen. Telling the woman to have the child is cruel, but so is terminating the pregnancy, since the fetus is able to be born. Thus, doctors advise, it is simply best to find out sooner.

Postnatal examination is equally important. Since last year, with the implementation of the eugenic fitness program, major hospitals in Taipei and Kaohsiung have begun newborn screening programs. "However," explains Dr. Wang, "since 400,000 babies are born on Taiwan every year, it is only possible to screen one-fourth of them. So of course some fish will escape the net". This, he adds, is not a medical problem, but a social one: pregnant women should take it upon themselves to seek out a hospital with a screening program.

Doctors emphasize that prevention is the best cure for birth defects. Therefore, couples who have planned to have a baby should do their "homework" first, and expecting mothers should by all means follow their doctors' instructions. Doing so can prevent bringing a deformed child into the world.

[Picture Caption]

The severely retarded children at "St. Anne's House" have I.Q.s below 30. These two girls, one (left) a victim of cerebral palsy, the other of Down's syndrome, can only smile for the camera.

Two lovebirds pose for their wedding picture. But have they thought about having a pre-marriage physical? (photo taken at Sesame Design and Photo Design Wedding Plaza).

(Above) Rows of healthy babies asleep in a maternity ward; before long they'll be running and skipping around.

(Below) These deformed infants, at "St. Anne's House," are just like the babies above-- except that they are destined to spend their lives in bed.

"You're---" The blank expression is a feature of children afflicted with Down's syndrome. Their sincerity and shyness make them at once lovable and pitiable.

The "magic eye" of the ultrasound machine is able to reveal many hidden deformities.

Two lovebirds pose for their wedding picture. But have they thought about having a pre-marriage physical? （photo taken at Sesame Design and Photo Design Wedding Plaza）.

（Above） Rows of healthy babies asleep in a maternity ward; before long they'll be running and skipping around.

（Below） These deformed infants, at "St. Anne's House," are just like the babies above-- except that they are destined to spend their lives in bed.

"You're---" The blank expression is a feature of children afflicted with Down's syndrome. Their sincerity and shyness make them at once lovable and pitiable.

"You're---" The blank expression is a feature of children afflicted with Down's syndrome. Their sincerity and shyness make them at once lovable and pitiable.