By Mary DeTurris Poust

Testing could be 'death sentence' for some children

Prenatal checks are worrisome because it could lead to couples aborting babies for minor imperfections, experts say

Every pregnant woman over 35 knows that at some point during her pregnancy she will be pressured to have tests to determine whether she is carrying a baby with Down syndrome. If she is older than 40 and pregnant, a woman can begin to feel as though she needs to justify her pregnancy to doctors, nurses and neighbors.

In our society's quest for perfection, a willingness to forgo testing and accept the possibility of a special-needs child is viewed by many as naiveté at best or irresponsible at worst.

Now, because of new technology and new recommendations from the American College of Obstetricians and Gynecol-ogists, every pregnant woman regardless of age will be offered routine testing to see if her baby is carrying the extra chromosome that causes Down syndrome.

It is one more step down the slippery slope of genetic testing that is becoming part and parcel of prenatal care in this country and around the world.

Testing is available for a host of conditions that directly impact newborns, but also for conditions that might not impact a child or adult until they reach middle age, if at all, such as Type 2 diabetes or early onset Alzheim-er's. In scientific circles, it is viewed as "progress," but for many others, especially those who have children with Down syndrome and other genetic conditions, it is much more sinister.

Simple eugenics

"It's a eugenics mentality that has taken hold of our country," said Mary Kellett, founder of Prenatal Partners for Life in Maple Grove, Minn., a support group for families preparing to have a special-needs child or are already raising a special-needs child.

Kellett, whose son Peter has Trisomy 18 (a condition like Down syndrome in which a baby is born with extra chromosomes, although Trisomy 18 is usually fatal), was told her baby would not live longer than two weeks and that she should "wrap him up" and do nothing for him. He is now 2 years old and the apple of his family's eye. Kellett said that Peter, the youngest of 11 children, is "our little teacher."

"These children have a tremendous amount to teach us. They are really teachers of our souls," she told OSV. "The spiritual gifts they bring -- love, compassion -- that's where you're going to see a real loss for the world."

Kellett said that pregnant women, especially older moms, feel a tremendous amount of pressure to test for Down syndrome and other genetic conditions. Until the new testing was available, the most common diagnostic test for Down syndrome was amniocentesis, which has to be conducted after 16 weeks of pregnancy and has the potential to cause a miscarriage.

Now all pregnant women will be offered the "safer" screening at 11 weeks, making it easier to go through with the testing and easier to go through with an abortion if the results are not to their liking, some experts said.

"The ability to test at an earlier time point helps people sanitize the act of abortion in their minds a little bit more completely. The earlier you go, the easier it becomes to justify in people's thinking," said Father Tad Pacholczyk, director of education at the National Catholic Bioethics Center in Philadelphia.

Crossing the line

Aborting for a serious condition like Down syndrome is only one moral problem associated with advanced testing, Father Pacholczyk said.

The other is testing that can lead people to abort their unborn babies for increasingly minor issues that may or may not afflict the child. For example, some genetic testing can predict a statistical likelihood for treatable diseases such as certain types of diabetes and diseases for which environmental factors play a role.

While, in theory, the tests may be given in a value-neutral way, often "it ends up practically speaking for certain diseases that it is virtually the equivalent of a death sentence for the child who is being tested," Father Pacholczyk told OSV, citing the example of cystic fibrosis.

According to a study from Kaiser Permanente, 95 percent of the women who were told that their unborn babies would have cystic fibrosis opted to have an abortion. Father Pacholczyk said that even something as minor as an extra finger viewed on ultrasound will often cause a couple to abort.

"It gets more and more trivial. Pretty soon you get to the point that it's just a girl instead of a boy. Once you've crossed the line, then you have surrendered the basic principle and you don't have much left to stand on," he said. "So, I think whether one's dealing with Alzheimer's very far down the road or with something more proximate, we have to be challenging people to, up front, be asking themselves why they are doing this test."

More than just bodies

Father Pacholczyk explained that if people are requesting genetic testing so that they can prepare themselves for what's ahead or so that they can potentially treat a condition in utero or immediately after birth, it is "morally acceptable."

"When you're talking about prenatal testing, what is important to have as your point of departure is always the mind-set that you are treating two patients here -- mother and child. If you get out of that framework, then you get into hot water," he said.

Kellett of Prenatal Partners for Life told OSV that Catholics, in particular, should remember that people are more than just bodies; they are souls as well. Special-needs children, especially those with mental impairments, are "little saints," she said, and have much to teach the world.

"There's a place in the world for these kids. They are loved and cherished and sent here by God for a reason, and I believe that reason is to make us all better," she said. "It's a scary scenario if there are no children like this, if we eliminate everything that does not meet our standard of perfection. In God's eyes, these kids are the perfect ones."

It's hard, yes, but life goes on

The push for increased and earlier testing for Down syndrome has prompted some Down-syndrome support groups to switch their focus from issues affecting children and families currently dealing with the condition in their everyday lives to those grappling with the decision of whether to abort due to a prenatal diagnosis.

Families Exploring Down Syndrome (FEDS) is a Michigan-based support group that is making a concerted effort to go into hospitals and explain to doctors and nurses what it means to have a child with Down syndrome and what it means to grow up with the genetic condition. Their children do much of the presenting, talking to audiences and sharing their thoughts about their lives. So far, the group has reached out to 1,700 professionals at 57 hospitals.

"The doctors know the negative stuff from the older days, but they need to know what life is like for those with Down syndrome today. It's not what they think," said Lucy Talbot, president of FEDS. "They have no idea that our kids are reading and playing hockey and driving golf carts and going to proms. I tell them that if they don't remember anything I've said, I just want them to remember these kids they've met and what they do."

Talbot told OSV that her group does not take sides on the abortion debate in order to "maintain credibility." Her groups focus instead on getting accurate information to hospital staffs so that parents who receive a prenatal diagnosis of Down syndrome as well as those who are surprised by it at the birth of their child can be fully prepared for what's ahead.

"We help them understand that, yes, it's hard for parents when they get the news, but life goes on, and for the most part none of us would change any part of it," Talbot said. "If they will get the patient to us, we will give them the information they need to make an informed and positive decision."

Mary DeTurris Poust is a contributing editor to Our Sunday Visitor.