In a legal settlement, a Connecticut couple has been awarded $2 million because their daughter was born with Cystic Fibrosis. The court assessed the penalty against the doctor who neglected to run a relatively simple blood test almost four years before the child’s birth. At first blush, this looks like a simple malpractice suit, but its moral implications are mind-boggling.
The desire to have healthy children is universal. In Genesis 9:1, God told Noah and his sons to “Increase and multiply, and fill the earth.” The only way to fulfill that command is to give birth to healthy children, who can then produce healthy children of their own.
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With medical discoveries occurring rapidly, it is normal for parents to request all available information about the pre-born child. This concern is especially present when specific diseases are known to run in families when the parents are older than usual, when complications arise within a pregnancy, or for a thousand other reasons.
An Unfulfilled Request
Such information was precisely what Elizabeth and Eric Trotter wanted on June 17, 2016, when, according to court documents, Mrs. Trotter asked her obstetrician to test her for the gene that causes Cystic Fibrosis (CF). Her doctor noted the inquiry but did not order the relatively simple test that only requires a blood, saliva or tissue sample.
When the doctor said nothing more about a positive result for CF, Mrs. Trotter assumed that the test had come back negative. Six months later, she delivered a healthy child.
Almost two years later, the Trotters gave birth to a girl they named Madelyn. A routine blood test done at birth revealed that Madelyn had CF.
The Nature of the Disease
According to the American College of Obstetricians and Gynecologists, CF is a genetic disorder that produces stiff mucus that eventually clogs the lungs. The average CF patient has a lifespan of thirty-seven years. Those with milder cases may live into their fifties. Of course, future developments could extend the lifespan or even cure the disease altogether.
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For CF to develop, a particular gene has to come from both parents. Generally, doctors test the mother first. If her result comes back positive, then her husband is tested. If both tests are positive, there is a fifty percent chance that their child will carry the disease and a twenty-five percent chance that the child will suffer CF.
The American Lung Association’s “Treating and Managing Cystic Fibrosis“ website makes it clear that life with CF can be arduous. It requires nearly constant care that involves several medical specialties.
Notwithstanding these hardships, those with CF can live relatively normal, loving lives. They can attend school, go to college, have families, and pursue other options that are open to all.
A Civil Lawsuit
However, when the Trotters learned of the birth defect, they sued the doctor, alleging that his negligence meant that “the Plaintiff’s parents were deprived of the right to make an informed decision regarding whether to conceive a child.”
According to the official court document, this negligence had three effects on Madelyn: life-long suffering, significant medical treatment, and “a life with Cystic Fibrosis, wherein she has suffered, and will continue in the future to suffer, the loss of the enjoyment of all of life’s activities, including the enjoyment of her family and friends and her personal, recreational and social relationships and activities.”
The complaint also listed the effects on Madelyn’s parents. They argue that their daughter’s medical care will require “them to withdraw from or limit their own activities and responsibilities, including their ability to engage in employment, pursue career opportunities and enjoy the pleasures of raising a normal, healthy child.”
A Moral Thicket
The Trotters seem to contend that it would have been better for all concerned—including Madelyn—if their daughter had never been born. Their own and Madelyn’s reduced “quality of life” would justify the denial of life.
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A Conspiracy of Eugenics
Father Tadeusz Pacholczyk has a doctorate in neuroscience. He is the Senior Ethicist at the National Catholic Bioethics Center. In 2006, he wrote an important article about “Temptations in Prenatal Testing.”
Most would argue that prenatal testing simply provides parents with important information. However, Father Pacholczyk sees something far more sinister, a “conspiracy of eugenics” that is “beginning to reach to all levels of society, affecting even Catholics and others of a strongly pro-life persuasion.” He then referred to a 2004 New York Times article. Its language cannot be more plain.
“Kaiser Permanente, a large managed health care organization, said that when both members of a couple among its patients in Northern California tested positive [for Cystic Fibrosis], 80 percent opted for the follow-up test of their fetus. Of those whose fetus was affected, 95 percent terminated the pregnancy.”
The Catholic Perspective
Father Pacholczyk arrives at other significant conclusions.
First, prenatal testing is not automatically sinful. It can serve essential and morally sound purposes. One is to treat the pre-born child in hopes of curing or ameliorating the consequences of the disease. Father Pacholczyk mentions Spina Bifida, where the spine doesn’t form properly. Sometimes, microsurgery can correct the condition before birth. According to the National Institutes of Health, the procedure “can improve mobility and reduce the risk of serious complications.”
Prenatal testing can also, Father Pacholczyk mentions, help the parents to prepare for the ways that a special needs child will change their lives.
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Grievous sin enters the picture if the parents abort the child. Sometimes, indeed quite often, this decision is made before the test. Too many modern parents deny the value of less than “perfect” children. Under those conditions, any disease, disability or malformation is, in effect, a death sentence.
Father Pacholczyk’s conclusion reminds everyone of something many parents of special needs children have experienced.
“Those families that manifest an openness and receptivity to every child God sends them, regardless of their imperfections and ailments, provide a compelling witness in our troubled times. Children with special needs certainly bring challenges, but they also bring great graces, opening our eyes to deep and important truths about life and the meaning of unconditional love.”
Children like Madelyn can unite the family as members deal with the sacrifices involved in caring for them. They invite family members to lose their self-centeredness and think of those in need.
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