The following article calls into question the blurred line between sufficient prenatal care and eugenics in the secular field of obstetrics.
The question I pose is where do you halt your curiosity to maintain clear judgment in regards to your unborn child? This boundary, I'm sure, is different for everyone and difficult to be sure of until placed in a similar situation, however, I think it does deserve previous contemplation and spiritual preparation.
As an example, to completely circumvent any temptation of abortion in the event of tragic news concerning their unborn child, I know some who avoid all intrauterine testing including sonograms. Others may find the total hands off approach to be extreme, but that stance truly prevents any possibility for Doctors to suggest termination due to a diagnosed birth defect. Moreover and undeniably the process of procreation has become so intrusive as technology and science have progressed. In the fast approaching future, I don't doubt that, through In vitro fertilization, parents will be able to choose their baby's sex and other distinguishing characteristics such as height and intelligence level. In fact, as part of the currently ongoing embryonic pre-screening done for IVF, embryos with an affinity for certain cancers and other fatal diseases are deemed unacceptable and are therefore never given a chance for implantation. What these practices really come down to is that yet again man is attempting to take on the identity of God, and we all regretfully know where those actions lead.
When Expectant Parents Hear “Bad News”
July 18, 2007
Like many other laypeople who found a new ministry, Monica Rafie first had to undergo a personal trial by fire. On her website, BeNotAfraid.net, she recounts what happened at the clinic in suburban Chicago in June 2001, when her second child, Celine, was 22 weeks along.
The OB left us in the exam room for a very long time. I don't know whether she had ever delivered bad news before. I wonder what must have raced through her mind when she looked over the ultrasound. Eventually she did return to the little room where I sat with legs dangled over the examination table and my husband bobbed our squirmy ten-month old son on his knees...We were told that our baby had hypoplastic left heart syndrome, a condition incompatible with life.
A few days later, Monica and her husband talked with a maternal-fetal specialist and were given the same options: termination, comfort care, surgeries or transplant. "By then we had done some research and had a better understanding of the situation. We knew by then that 'incompatible with life' was not entirely accurate. We also knew that if our baby would survive, it would require that we fight for her. We didn't know yet exactly what we would do, although termination was out of the question."
Next, something fairly common in prenatal counseling occurred: these parents discovered that the first diagnosis was wrong. The baby had hypoplastic right heart syndrome, a very rare defect and one with a somewhat better prognosis than the first. When their daughter was born, she showed symptoms of heart failure within hours and required her first open-heart surgery at just barely one week old.
Many months of "fighting for her" followed, with little Celine doing a good deal of fighting herself, with two more surgeries to follow, and the unpleasant post-surgical experience which included dehydration, suture pain, IVs, chest tube removals, poking and prodding, not to mention simple boredom in the hospital bed. But, as her mother maintains, it was a matter of trading temporary discomfort in exchange for her very life.
Today, Celine is a normal five-year old with excellent heart function and no developmental delays. She may have a pacemaker in her future but her slapstick sense of humor gives no hint of discouragement.
During this experience, Monica's search led her to online sites that featured "termination message boards", where nobody was really allowed to offer hope or support. "They were little chambers of doom" she reports, places where parents were trying to cope with the advice to "say goodbye early."
Many women, she discovered, are willing to take the practitioner's advice at face value, "usually out of fear." One physician remarked to a mom with a difficult pregnancy that "it would be selfish and cruel to have this baby"! Such episodes are evidence of the degree to which eugenic thinking has seeped into American medicine today. Pediatricians are very familiar with the quest for the "perfect baby", the option to terminate and "try again". Many families, when caught up in the urgency and shock of the crisis, never think to question the authority of physicians who go beyond the medical realm to offer arbitrary assessments of the "worthiness" of a life, sometimes in stunningly insensitive language.
Monica's research also revealed that on numerous occasions ultrasounds and other prenatal technology can lead to misdiagnoses and over-diagnoses — which then lead not only to unfortunate decisions about terminating the baby's life, but also the emotional trauma of knowing it was all a terrible mistake.
She also discovered that there were very few websites devoted to collecting stories of women who had the courage to defy the experts, be they Catholic women or otherwise. After some advice from her husband, who owns a web development company, the BeNotAfraid website — a glossy, sleek-looking effort — was launched.
"Our site is not actually not about abortion, it's about what happens when you choose life", Monica explains. "And it's not just for faithful Catholics, although there are many great Catholic medical ethics resources which we selectively prefer", she adds, "nor is it a grief site" (it is full of incredible stories of hope and joy, in fact). "It's really for anyone open to — or even just willing to be open to — the idea that carrying the baby and facing whatever comes after with trust and gratitude to God is really the right way to go."
Then there's all the valuable information families will find on the site. With all the ill effects of the Internet, we can be grateful for its invaluable laser-like power to search out highly specific and needed information of this kind.
For example, in the pull-down list of some two dozen genetic problems covered on Monica's website, Pallister-Killian syndrome is one of the more obscure, with only some 200 known cases worldwide at the moment. Yet someone — possibly after an experience such as Monica's — has founded www.PKSkids.net to serve these families.
In addition to personal testimonies from families who have chosen to put aside their fears, the BeNotAfraid site contains a message board, where parents may find posted, say, the contact information for the best specialist physicians treating a certain condition. The board also serves for posting prayer requests, prayer support and other spiritual (mostly Catholic) resources.
Finally, the site's Resources area has a very extensive collection of links on topics like medical/financial assistance, groups specializing in a particular prenatal problem, fetal surgery, grief resources, future planning, and many more.
In some ways, this site for twenty- and thirty-somethings may typify the new face of the pro-life movement, especially in the fact that politics does not appear anywhere on it. "I'm interested in helping and supporting families who arrive at their own decision for life", Monica reflects. "There is a time and a place for discussing legislation and the awful injustice of abortion, but that's not what our outreach is about. I think that's one reason why some medical professionals feel comfortable sharing the outreach with parents."
Perhaps most importantly, all these stories end in joyful victory, even when a child is lost. If you've ever wondered what the statement "suffering is salvific" might mean, go to the site and read the story "Anouk" (under "Anencephaly") that begins: "On the 18th July 2000, our fourth child, Anouk, was born. Thirteen hours later she died. Today, I will try to write down what we lived through with her."
The visitor will find here many beautiful and extraordinary stories of harrowing fear finally overcome by joy. As one father states it, "We could choose to love this child (no matter what) or choose to be afraid of the future, of how this person would change and affect our lives. In choosing to have the baby, we did not think that God would magically 'rescue' us from difficulties now or in the future, but that He would give us the courage to learn how to love more deeply through whatever the future may hold."
Elias Crim is a publishing consultant who writes from Valparaiso, Indiana.