The following article, When A Baby Is Destined To Die [article quoted below], was brought to my attention by a fellow member of the STOP EUGENICS campaign. Thanx Joe!
The article is about a Catholic couple who found out that their baby would not live for long. But as part of their faith, they decide to continue with pregnancy. You can read the article and form your own conclusions, but as Joe pointed out one salient detail in his email:
These people *KNOW* that their kid might die etc, yet continue to have them regardless. Am aware that this is pregnancy which is different from a McDonald’s style selection of embryo’s.
My concern here, is not the ethics of the situation or the moral dilemma inherent in the awful choice that parents have to make when faced with such a predicament. My concern is the differences in the way Deafies are treated by the hearing media and the ignorant and misinformed feedback frenzy it elicited, and the way hearing people are treated by the same media.
Sure, the title of the article is designed to tug at the heart strings and elicit sympathy for the parents, especially the mother, there’s nothing newsworthy about that. As you read the article, the thing you notice is how sympathetic it is towards the parents. Whom we can safely assume to be hearing and otherwise able bodied. The couple is not castigated for the choices they make. Indeed, the article strives to understand, and make the reader understand.
Contrast this with the way Deafies were treated by the media in the recent discussions about the Human Fertilisation and Embryology Bill. This bias is would not be immediately obvious to hearing and abled bodied people. They don’t think about it, because they do not have to deal with it. But to us Deafies [and Disabled], it’s only too glaring.
Then again, maybe the writer [media] is not as informed as we are led to believe. Behind this sympathetic article is the assumption that disability, period, is an awful state of being. How could we not feel anything but sympathy for the poor parents? How could we not see that a disability or condition that afflicts the child means a poor quality of life or no life at all? We should not question the parental right to make a decision regarding continuation or termination of pregnancy!
For all intents and purposes, this article is still in keeping with the belief system that anything less than the five senses and all limbs and body functions working perfectly, is no life at all. In that sense, it does not deviate from the view that many hearing people have of a deafness as an awful calamity. There is no appreciation of the fact that deafness and disability are not absolutes. There is no appreciation for the varying degrees of impact, and many people who are deaf or disabled lead perfectly happy and productive lives.
Contrast this with Deaf people who would have no qualms about having deaf offspring!
When A Baby Is Destined To Die
It didn’t matter that the doctor told her that what looked on the screen like pockets in her son’s brain would likely disappear as he got closer to birth. That things were probably fine. That she shouldn’t worry too much about her baby.
She was his mother. And she felt certain that something was wrong.
As her pregnancy progressed throughout the winter of 2005, other tests raised more red flags until finally the phone rang one afternoon as she stood in the yard of her Seattle home. On the other end was a geneticist, confirming the results of her amniocentesis: the baby had Trisomy 18.
The chromosomal abnormality, which causes heart, kidney and severe mental disabilities, is usually fatal. It occurs in about 1 in 6,000 live births, but many babies who have it die before they are born and those who live often only survive a few days. Less than 10 percent live one year or more.
As Jeanne and her husband, Steve, both Catholics, talked with doctors, they were always clear that they were going to continue the pregnancy. It was against their faith to do otherwise. And they were just as deliberate in planning to parent their son, who they named Robbie, the best way they could, for as long as they could.
As the number of pregnant women being routinely screened has risen, so have dire diagnoses before birth. Only 15 years ago, prenatal screenings could detect less than a dozen conditions, while now it’s possible to test for hundreds, ranging from mild forms of hearing loss to deadly Duchenne Muscular Dystrophy.
But the paradox of modern medicine is that knowing doesn’t always mean the outcome will be better. Sometimes you can just see death coming from a long way off.
“The ability to diagnose these problems has absolutely raced ahead of the ability to care for these families,” says Amy Kuebelbeck, whose book “Waiting with Gabriel” chronicles the life and death of her son, who was diagnosed prenatally with a deadly heart defect in 1999.
Two choices, both heartbreaking In response to the growing number of families struggling with wrenching choices, about 55 perinatal hospice programs have sprung up around the United States in the last decade, says Kuebelbeck, who tracks them on her Web site www.perinatalhospice.org. The programs are designed to provide medical and emotional support for families with a terminal prenatal diagnosis who decide to continue the pregnancy.
“Before a baby would pass away and the family may not know what’s going on. Now potentially someone could have an abnormal screening and diagnosis at 12 weeks and have this whole pregnancy stretch ahead,” says Cheri Shoonveld, a genetic counselor for Fairview Health Services in Minnesota and a spokesperson for the National Society of Genetic Counselors. “Families are having to make a lot more decisions and have a lot more time to think about the impact.”
Studies don’t specifically track how many families in the United States choose to continue the pregnancy after receiving a terminal prenatal diagnosis, but in Shoonveld’s experience only between 10 percent and 20 percent of families go on with the pregnancy after hearing the devastating news.
However, a small British study in 2007 found that about 40 percent of families with a terminal prenatal diagnosis decided to continue the pregnancy when perinatal hospice was offered.
Both options — to terminate or continue the pregnancy — are heartbreaking.
FURTHER READING:
ANALYSIS: The HFEB & Clause 14(4)(9) Media Feeding and Talkback Frenzy P2
ANALYSIS: The HFEB & Clause 14(4)(9) Media Feeding and Talkback Frenzy
Deaf People & Genetics: Media Coverage, Part 2
Deaf People & Genetics: Media Coverage
MEDIA WATCH: A Cacophonous Din of Ignorance & A Sane Voice [More Linx]
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