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Saturday, January 08, 2000

Baby Sam's gripping debate
A photo snapped during prenatal surgery sparks a new debate about when life begins

Elena Cherney
National Post

Michael Clancy, Saba
Right to Lifers see this photo, snapped during a risky surgery on a 21-week-old foetus, as evidence that the foetus is a living human being.

Samuel Armas shows no signs of hydrocephalus, a common complication of spina bifida.

Julie Armas started to pray for a miracle as soon as the ultrasound technician told her he had spotted the telltale anomaly in her baby's brain.

Her prayers led the 28-year-old Mrs. Armas and her husband, Alex, from their home in Douglasville, Ga., to Nashville, Tenn., for experimental surgery on their 21-week-old foetus and, because of a single photograph taken during the surgery, landed the couple and their baby at the centre of a new debate over the dividing line between foetus and baby.

Baby Samuel had been diagnosed with spina bifida, a devastating defect in which the developing foetus' backbone and spinal canal fail to close. The defect causes disabilities including paralysis of the legs, incontinence, learning problems and hydrocephalus, the accumulation of water on the brain. A significant proportion of North American parents who receive a diagnosis of spina bifida abort their babies.

Not the Armases. They embarked on a search for a cure.

Still too small and fragile to survive outside his mother's womb, Samuel underwent a risky and unproven procedure on Aug. 19 that his parents hope will limit the effects of his spina bifida. He was born Dec. 2, weighing 5 pounds, 11 ounces. He is still too small for doctors to make a long-term prognosis.

But his operation has had at least one lasting effect. When his tiny hand slipped out of the incision in his mother's womb, Dr. Joseph Bruner, Samuel's surgeon, slipped his finger into the baby's fist, and a USA Today photographer snapped a picture.

The photograph has since been reprinted around the world. The National Right to Life Committee bought the rights to it last fall, posted it on their Web site and featured it in a newsletter that reaches 400,000 subscribers.

Samuel's tiny hand has affected thousands of Americans, many of whom have called the Right to Life to ask about the picture, says Laura Echevarria, the director of media relations for the National Right to Life Committee. The photograph, she says, tells people that Samuel is a "living human being and is deserving of life," even though he is not big enough to survive outside the womb. For most new parents, "one of the most precious, shocking moments is when that baby grasps your finger for the first time. You realize it's completely dependent on you. That moment is locked in your mind."

In the picture, Samuel's hand looked like that of any newborn baby -- "except it was a much smaller baby. It was what people wouldn't consider viable."

At 21 weeks, a foetus cannot yet survive outside the womb, but its organs are completely formed and "it looks like a tiny human," says Dr. Bruner.

Despite his inability to survive outside the womb, Samuel's humanity, with his fingers wrapped around Dr. Bruner's, was undeniable in the photo, Ms. Echevarria says, and has refocused the abortion debate. Samuel's picture showed that a foetus is a baby, she said, and not simply the "products of conception," as pro-choice advocates have sometimes put it.

But Samuel's little hand, while it may have an impact on public opinion, does not change the questions at the heart of the abortion issue, says Dr. Mark Bliton, a philosopher who heads the ethics committee on foetal surgery at Vanderbilt University, where Samuel was treated.

"It certainly is true that with the advent of foetal surgery, life before birth takes on an emphatically different moral complexity," says Dr. Bliton, who has counselled the more than 80 couples who sought prenatal treatment for their spina bifida babies at Vanderbilt. Parents chose surgery in 75 cases.

"Life in its morally relevant sense surely begins when the foetus becomes a patient," he says. "It now accentuates the focus on what sort of moral presence does the foetus carry with it."

Dr. Bruner, who pioneered the prenatal surgery for spina bifida, believes that foetal surgery "takes place at the nexus of societal and scientific values," and that "one of the fallouts of our work is that it has had an effect on the abortion debate. Foetal surgery and abortion have always gone together hand in glove."

The doctor who is considered the "father" of foetal surgery, Sir William Liley, went on to become an outspoken pro-life advocate.

Dr. Bruner is somewhat reluctant to discuss how performing the surgery has affected his own feelings about abortion. But he hopes that by perfecting the surgery, the defect will come to be widely viewed by parents as a correctable problem rather than a reason to abort. "When we've reached that point, our work will be complete," he says. Decreasing the number of abortions is not his primary goal, but is one of the benefits of his work.

It is difficult to do the surgeries Dr. Bruner has done without becoming attached to the tiny patients. He talks about the "relationships" he has "developed with these foetuses," and how his own "spiritual growth and development" have been touched by these relationships. "It's a fantasy of mine that someday I'll be able to sit down and talk with these children," he says.

Since performing the first prenatal spina bifida surgery in 1997, Dr. Bruner has held several tiny hands. Taking Samuel's fist, he explains, "was perfectly natural for me because I have had a very personal relationship with all of these foetuses. Parents almost always ask me to say a few words to their baby. I am the first person to see these foetuses. I am the first person to touch these foetuses."

While the USA Today photo made it look as if Samuel was grasping Dr. Bruner's finger with the reflexive clutch of the newborn, it was in fact Dr. Bruner who grasped, and Dr. Bruner who was compelled by reflex. "It was a perfectly natural reflex for me to grasp his hand. I almost instinctively took his hand." Samuel was anaesthetized, and while he may have grasped Dr. Bruner's finger, Dr. Bruner did not feel it.

Dr. Bliton and pro-choice advocates argue that using the image of Samuel holding Dr. Bruner's hand to promote the pro-life argument is misleading. "It's confusing things," says Dr. Bliton. "It's taking something compelling out of context. It rubs up on the abortion debate but it doesn't mean anything."

The foetus's resemblance to a full-term baby should not be relevant to the abortion debate, pro-choice advocates argue. "Anti-choice groups are always trying to get the foetus established as a person," says Marilyn Wilson, executive director of the Canadian Abortion Rights Action League.

Under both Canadian and U.S. law, abortion hinges on the mother's rights, while the foetus, even if viable, is not a legal person until birth. "It is the choice of the woman whether to have the child," says Ms. Wilson. (However, in many provinces and states, access to abortion is severely curtailed during the last trimester, and in some jurisdictions, including Ontario, is limited after about 20 weeks.)

But pro-life advocates on both sides of the border see Samuel's picture as an example of what Sandra Day O'Connor, a U.S. Supreme Court justice, once termed the inevitable "collision" between medical science and abortion. Medical advances in prenatal surgery proved to the world that Samuel Armas at 21 weeks, although not viable, was already a baby, argues Gwen Landolt, founder of the Toronto chapter of Right to Life. "It's exposing the [pro-choice] fallacy and misrepresentation, which was really very deliberate, of the child in the womb."

Julie Armas agrees with Ms. Landolt. A soft-spoken woman with an easy laugh and a pretty Atlanta drawl, she is happy that a picture of her baby, and her uterus, is being used by the National Right to Life Committee.

"We think that's great," she says. "The fact is, we are pro-life. If God wants to use that, then that's fine." In the past, the Armases have given money to the National Right to Life. Mrs. Armas, an obstetrics nurse, volunteered at a pregnancy crisis line. She has been asked to speak at local churches and plans to do so when Samuel is a bit older. A devout Christian, abortion never crossed her mind when she learned her baby had spina bifida.

Mrs. Armas talks about her choices in a matter-of-fact way, in the same tone with which she describes the tomato sauce she is preparing to serve with pasta for dinner. Religion is as much a part of her daily life as cooking supper.

Her unwillingness to consider abortion distinguishes her from the vast majority of parents, says Dr. David Chitayat, head of the prenatal diagnosis program at Toronto General Hospital. Ninety percent of the spina bifida diagnoses he has made during the last six years have ended in abortions.

The spina bifida parents who come to Vanderbilt in search of surgery are all religious, from a variety of Christian denominations, and their faith eliminates abortion as an option. Commitment to this unborn, yet already named, family member enables these parents to muddle through the moral dilemma of subjecting a baby whose defect is not life-threatening to a procedure that is life-threatening.

In the early days of prenatal surgery, only foetuses whose conditions would certainly kill them in the womb or immediately after birth were considered candidates for these high-risk operations, which can trigger premature labour or even endanger the mother's life, says Dr. Bliton.

But the spina bifida surgery is not a life-saving operation; it is a life-risking operation to attempt to prevent a physical and mental disability. Dr. Bliton has concluded that even for these religious, committed pro-lifers, "there is something worse than the death of their child. What is worse is a kind of disability where a child's personality will not develop to the point that the child will be able to recognize the parents."

A tension exists between the refusal to contemplate abortion and the willingness to risk a baby's life to fix a non-life-threatening defect, Dr. Bliton observes. "It's a fabulous tension," he says. "I've been worrying about it for two years."

He has concluded that it's not that the parents would rather lose their baby than bring up a profoundly disabled child. Rather, because they accept their child as a family member even before birth, they feel an obligation to provide the child with the best medical care.

While the Vanderbilt team has yet to publish conclusive results, their first study, published in the Journal of the American Medical Association in November, concludes, based on the first 29 surgeries, that fewer of the babies who underwent the prenatal procedures developed hydrocephalus, an accumulation of fluid on the brain requiring a shunt (an alternative path for a bodily fluid). Only 59% of the babies who had the surgery required shunts in the first two years of their lives, while 91% of the babies in the control group, who did not have the surgery, needed the shunts.

Brain scans of the babies who have had the surgery do not show the malformations that are so evident in spina bifida cases, says Dr. Bruner. Samuel, despite the ultrasound that showed an anomaly before his birth, has since birth had two normal brain scans.

The doctors say that the chance that their child could escape the worst complications of spina bifida excites the parents who choose the surgery. They do not experience the news that their baby has a birth defect as a loss or a cause for grief. Like the Armases, they turn to their faith. When they hear about the surgical option, "they speak of God guiding them." They have been given no choices in the genetic lottery that assigned their baby spina bifida. Surgery gives them a choice. "Many parents saw themselves embarked on a journey, a voyage, even a pilgrimage, coming to see us," says Dr. Bliton. For a few, the pilgrimage carries an even heavier burden. Several have told him, "There's a reason God chose us to have a baby with spina bifida, and we must bear that burden gladly."

Mrs. Armas still prays for a miracle. Samuel shows no sign of hydrocephalus, which is a common complication of spina bifida and can lead to retardation. Although his two brain scans have found no sign of damage, neither Samuel's parents nor his doctors will know for sure whether his brain functions are intact until he starts hitting developmental milestones: the right age for clapping, pointing, laughing, talking.

Although just barely bigger than his 5-pound, 11-ounce birthweight, Samuel has started physiotherapy for his legs. His parents were much comforted when a specialist examined him days after his birth and pronounced, without prompting, that their boy would walk.

And then, his mother takes comfort from what she is sure she observes as she nurses him and plays with him. "He appears, of course I'm prejudiced, very alert. He's got amazingly good head control for a five-pound baby."

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