A ‘Brave New World’ of Genetics Leaves Clergy Fumbling for Answers

When their child was born with a life-threatening genetic liver defect 22 months ago, the Rev. Jim Mishler and his wife, Jan, looked to San Diego’s religious community for moral and spiritual support.

Mishler is executive director of the San Diego Ecumenical Conference and Jan is an active lay person in the United Church of Christ. If ever a couple could count on receiving the support, prayers and embraces of friends and fellow religious, it would seem to be the Mishlers.

But the comfort and support they sought did not come.

“We didn’t need this; we didn’t want this,” Jan Mishler said of their son’s defect. “It was a very stressful time. And while we know a lot of preachers very well, none of them called us--including the one who baptized David the day before we took him to the hospital for surgery.”

Jim Mishler said: “I would have expected the religious community to be able and capable of responding to our need (for comfort). But our spiritual leaders had great difficulty in responding to us. We needed them to help us deal with the pain we carried around, not only during the crisis period but during the low-level anxiety afterward.”

And while their voices still carry some tinge of bitterness over the experience, the Mishlers say it points to a real problem with today’s clergy, rather than a specific indictment of their friends:

“They didn’t call us for a reason,” Jan Mishler said. “They were desperately afraid of what we were facing and were afraid to face it with us.”

“They’re more comfortable with the Bible and writing next week’s sermon,” her husband said, “than dealing with the brave new world of genetics.”

Indeed, while priests, ministers and rabbis may be able to effectively homilize on their holy days and offer premarital counseling, sympathetic words to the sick and soothing remarks at funerals, many are afraid or ill-prepared to offer comfort to parents of children born with birth defects.

That was the consensus of a two-day conference in San Diego last week, sponsored by the March of Dimes, in which about 50 doctors, geneticists, social workers and clergymen, including Mishler, discussed how they can better work together in counseling parents faced with the news that their child will come into the world with a birth defect.

If physicians of the body and physicians of the soul have long been bedfellows, their partnership is entering an era of new challenges.

As doctors and geneticists, with remarkable advances in science, are better able to tell parents about the likelihood of their children being born with defects, the clergy is being asked to help those parents cope with the knowledge and to offer guidance in making decisions about that child’s future.

In the extreme, newlyweds and couples engaged to marry, who have reason to believe their future children may be born physically--and perhaps lethally--defective, are asking their clergy for advice on whether they should attempt to have children. Some clergymen wonder if premarital counseling should include a genetic background check of the man and woman, to alert them if their future children may be genetically flawed.

More typically, the clergy’s guidance is being sought by heart-sick parents who have been told by geneticists that their unborn child will be born with birth defects, and are considering aborting the child even though theirs was a wanted pregnancy.

That’s an uncomfortable position for a clergyman, especially one whose church is staunchly opposed to abortion, said the Rev. Robert C. Baumiller, a Roman Catholic priest who also is chief of genetics at Georgetown University Hospital in Washington.

Yet, it’s an unescapable position if the clergyman is asked to counsel a person confronted by an unsettling genetic issue, he said.

“If you have a pastoral bent, you must first listen to the person to sort out what he will do (about the unborn child), despite whatever you may say about it,” Baumiller told the conference. “As a human being, we sympathize with anyone who faces a difficult decision of trying to do the right thing.”

It might be too easy, he said, for a clergyman to advise a woman bearing a defective child to heroically keep the baby so the newborn can at least be baptized.

“But I have to recognize that the woman is simply not capable, at that moment, of doing a truly heroic act,” he said. “People who select to abort know they are not doing the optimum thing, especially if it was a wanted pregnancy. Their pain is great, and sympathy for them should be great.

“In the Catholic tradition, we don’t say that what she would do is a good thing. But you have to recognize that she is doing the only thing she can do. So while you can’t approve her action, you can offer her reconciliation.”

If the person is not yet pregnant, but has reason to suspect she or her husband carry defective genes, the couple must decide--perhaps with the help of both geneticists and clergy--whether to have a child naturally, adopt or turn to another medical alternative. Again, the clergy can help the couple grasp the problem from a theological point of view, Baumiller said.

If the woman becomes pregnant, she may seek a clergyman’s advice on whether she should have an amniocentesis, a surgical process in which amniotic fluid is tested to check for chromosomal abnormalities in the fetus.

The question is, how well the parents will deal with the findings of the amniocentesis, Baumiller said. For instance, it might disclose that the child will be genetically flawed only mildly--so slightly that the parents would otherwise not be able to detect it after birth but which, because of the disclosure, might affect their attitude toward the baby. “In other words, the procedure may give you information you would rather not know,” he said. “It can take some of the joy out of the birth.”

Furthermore, the amniocentesis might prompt the woman to have an abortion or, on the other extreme, help the parents better prepare for the birth of a physically and/or mentally handicapped child.

If a child is born with a birth defect, the clergyman may be asked to help share that news with other family members, Baumiller said. “It’s not unlike sharing the news of a death,” he said.

“And there is the question of whether to ‘waste’ a favorite name on a child who has a birth defect, or to come up with a different name and save the favorite name for another child,” he said.

“People are being forced into making decisions they’re not terribly proud of, and then they have to reconcile those decisions at a later time. And, all the while, they don’t want to be preached to,” Baumiller said.

Eileen Fagan, a social worker who works with the parents of children born with cystic fibrosis, offered insight to the clergy about the affects on parents whose children have birth defects.

“The parents will have shattered self-adequacy and self-esteem, and an overriding feeling of guilt. They will consider themselves to be ineffective parents.

“There may be resentment towards the child and possibly rejection of the child,” she said. “They may abuse or neglect the child because he’ll mess up their life style. Or, the parent might be overprotective, and not give the child room to breathe or get his feet wet in a puddle.”

There will be tension in the marriage because the spouses will grieve in different ways over the child’s condition, Fagan said. “Just because a husband does not talk about it doesn’t mean he’s not hurting, or just because the mom is busy, busy, busy doing her work, that doesn’t mean she’s not hurting. Yet, one assumes the other one doesn’t care or is not hurting.”

And, as the child grows older, there may be disagreement between husband and wife over how the handicapped child should be disciplined when he misbehaves, she said.

The parents might overindulge the child--at the expense of other siblings, she noted.

The parents may be troubled, on the other hand, about planning the child’s future, especially when it is unclear whether the child will live long. Some parents, Fagan said, are reluctant to even place a child in school if they don’t believe he will live to experience more than one or two years of school life.

Caring for the child will come at the expense of the parents’ intimacy with one another, she warned the clergy.

These are just some of the strains on a marriage and a family which the clergy can help identify and resolve, she said.

The Rev. Kenneth Light, pastor of Tierrasanta Lutheran Church in San Diego, said he has not yet been asked to offer counseling to a person on the issue of genetics, but was thankful for the conference to prepare him for that possibility.

“In our pastoral role, it’s an area that is becoming more likely for us to have to deal with--and what we have to do is equip ourselves in how to deal with it,” he said.

Jan Mishler said, “We need to establish the groundwork for clergy who are afraid to give of themselves to people who are afflicted. Having a child with a birth defect is like being on an emotional roller coaster, and that’s when you need the church to be for you.”

Jim Mishler said, “What we need from the clergy is someone who will be, first and foremost, for the parents. The clergy will ask, ‘How’s your son?’ but nobody asks, ‘How are you ?’ ”