by Barbara Lyons
Most expectant parents, when asked if they want a boy or girl, respond that they don’t care, as long as the child is healthy. Parents have been known to count their baby’s fingers and toes almost immediately after birth for reassurance that the baby is okay.
With most pregnancies, a normal outcome can be expected. However, in that small number of pregnancies where something has gone awry, hopes and dreams can be shattered, and parents truly experience a sense of loss. Most often, this does not mean they love their child any less, but they grieve for their child and themselves, and experience fear and uncertainty regarding the future. What changes will they have to make in their lives? How severe is their child’s disability? What does the prognosis, which is often overly grim, mean? Will their child live or die?
Prenatal Testing
Increasingly, with the legalization of abortion at all stages of pregnancy, prenatal testing and diagnosis has become a tool by which parents decide whether or not to end the life of their unborn child should a disability be present. Physicians are pressured to offer such tests out of fear they will be successfully sued for the “wrongful” birth of a child with a disability.
Currently, most testing is done around 15 to 20 weeks into the pregnancy. The most common diagnostic tests are alpha-fetoprotein testing (AFP), ultrasonography, amniocentesis, or a combination of any of these tests. Although chorionic villus sampling (CVS) is conducted early in pregnancy (usually 8 to 12 weeks), some medical studies have found the miscarriage rate to be twice as high following CVS than for amniocentesis. 1 Chorionic villus sampling is also associated with the birth of babies with limb abnormalities (1 – 6 percent) especially when CVS is performed before the 8th week of pregnancy. 2
Down Syndrome
The most common genetic abnormality is Down syndrome, which affects one in 700 births. Down syndrome is most often associated with women who become pregnant at an older age and, perhaps, paternal age greater than 55 years. While for women in the 15 – 19 age group, the occurrence of Down syndrome is one in 2,300 births, for women over age 45 it is one in 46 births. 3
Although not considered a severe disability, 92 percent of Down syndrome children detected prenatally have their lives ended by abortion. 4
Neural Tube Defects
The second most common abnormality is the presence of a neural tube defect (NTD) which is “any defect of brain and spinal cord caused by failure of the neural tube to close during growth during pregnancy.”5 The incidence of NTD is one child in 1,000 births.6 This means that approximately 2,500 infants with NTDs are born in the United States each year. 7
Neural tube defects cause conditions known as spina bifida (open spine), anencephaly (lack of brain formation), and encephalocele (an abnormal closure of the spinal column). Anencephaly is a condition incompatible with life, and these infants usually die within a few hours or days. Typically, spina bifida is accompanied by hydrocephalus (fluid on the brain) in 70 to 90 percent of infants. “All will have bowel and bladder abnormalities, although with new techniques, bowel and bladder continence is becoming a realistic goal for most individuals with spina bifida,” according to Dr. Harold Rekate, an expert on treatment for spina bifida.8 Intellect of children with spina bifida can range from profound retardation to high intelligence, although few have profound retardation. 9
“One of the most exciting medical findings in the last part of the 20th century is that folic acid, a simple, widely available water-soluble vitamin, can prevent spina bifida and anencephaly,” proclaims a March 1993 editorial in the Journal of the American Medical Association. 10 Consequently, the U.S. Public Health Service has recommended that all women of childbearing age capable of becoming pregnant should consume 0.4mg. of folic acid every day to reduce the risk of a neural tube defect. 11
An unknown number of children with NTDs are aborted each year. 12
The overall rate of abortion when an abnormality is detected in the child is at least 73%, with some authorities placing the rate between 80 and 100 percent.13
Designer Babies?
Not only are there questions about killing unborn children, but new technology has raised ethical questions regarding whether or not having a baby is becoming analogous to buying a car. These new technologies include:
- screening embryos conceived through in vitro fertilization for genetic defects,
- screening for the sex of the child, and
- discovery of genes which could signify significant disease or even behaviors at some later time in the individual’s live.
For example, in a recent study of 200 couples by the New England Regional Genetics Group, 1 percent would abort on the basis of sex, 6 percent would abort a child likely to contract Alzheimer’s in old age, and 11 percent would abort a child predisposed to obesity. 14 This raises the specter of an eugenics society which regards the perfection of the person as more important than the existence of the person.
Some justify this discrimination by arguing that the child is a “burden” placed on the family, that the child is “spared” a life of “suffering,” or that the child is “better off dead” because his/her life is deemed not worth living. These attempts at justification speak volumes about cultural attitudes which demean those who have differences, and how far we have come in accepting elimination of those differences by whatever means available, including death.
Help for Families
Unquestionably, society must be concerned about the additional stress placed on a family caring for a child with a disability. We must be committed to providing services which not only assist the family but also offer opportunities for the child to reach his/her full potential. Fortunately, many of these opportunities now exist with:
- educational programs geared to the needs of the individual with disabilities.
- birth-to-three early intervention programs, the goal of which is to enhance the development of the child in the earliest years when results are most beneficial.
- vocational programs to train those with disabilities.
- assistive technology, which perfects technological devices such as computers and voice boxes to assist specific disabilities.
- independent living programs to allow persons with disabilities to live in the community.
- programs to assist the person with a disability to be employed.
- codes requiring public places to provide access for people in wheel chairs.
Finally, many caring families are willing to adopt children with disabilities.
How must a person with a disability feel to know that his or her existence is deemed so meaningless, so valueless, that an unborn child with any disability can be destroyed by abortion? That attitude can, many times, be more of a burden than the disability itself.
Parents who learn that their unborn child has a disability are initially confronted with fear and uncertainty.
Read how the Shamblin family responded when faced with the news that their unborn baby had serious deformities.
Read how Senator Rick Santorum and his wife, Karen, dealt with a diagnosis of a fatal fetal deformity mid-way through pregnancy.
