January 30, 2012 (LifeSiteNews.com) – A couple meets with their doctor to review the results of a routine diagnostic test recently performed on their unborn child. Instead of the expected reassuring news that their baby is fine, they are given a poor prenatal diagnosis. The doctor, compassionately but in very dire terms, points out the many anomalies the test has uncovered. The doctor concludes by saying, “Your child’s condition is incompatible with life.”
Healthcare professionals use terminology to convey information about a patient’s diagnosis. Unfortunately, when explaining the diagnosis, objective, factual, information gets mixed in with opinion and value judgments. This can lead to an understanding on the part of the parents of an unborn child that their child no longer exists in the eyes of the medical profession and there is no reason to continue the pregnancy.
Parents are not only stunned to learn that their unborn child has a poor prenatal diagnosis but the parents also come away with the perception that their child’s condition has usurped its right to life – any life, no matter the duration.
Members of the medical field will argue that the term “incompatible with life” is an assessment of the child’s ability to survive outside of the womb. ** But, what they fail to understand is the critical and significant role they perform when imparting that information to parents in this situation. Parents look to their doctors, nurses, geneticists or other healthcare professionals as the people with all the information and knowledge.
Parents rely on them as the experts – they have all the experience and the advice. But, in fact, what may be lacking is the wisdom that the patients really need.
When they use the term “incompatible with life” these medical professionals can, unintentionally, take away a parent’s right to choose. The term can convey a message that there is no choice but to terminate the pregnancy. The label “pro-choice” is most often associated with the right of a person to choose an abortion. But choice has to include the right to choose to carry to term your unborn baby with a poor prenatal diagnosis.
In a conference at the University of Alberta in 2008 titled “The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life,” Tracy Koogler, in a paper presented on behalf of Koogler, Wilford and Ross, discussed the term “lethal anomalies.” Ms. Koogler said, “The label is not only inaccurate, it is dangerous; by portraying as a medical determination what is in fact a judgment about the baby’s quality of life, it wrests from the parents a decision that only the parents can make.”
Dr. Amina White a pro-life doctor of obstetrics and gynecology has this perspective on the term, “Genetic counselors, perinatologists, obstetricians, and other medical providers may use the term ‘lethal anomaly’ or ‘incompatible with life’ most often to describe severe brain anomalies like anencephaly, absence of the fetal kidneys, or severe body wall anomalies. Anencephaly, for example, is a condition in which the majority of a child’s brain is absent, and death usually occurs within hours of birth. However, there are case reports of anencephalic infants with a healthy brain stem surviving for much longer. What is even more concerning is that the same terms have been used to describe conditions associated with a poor prognosis like Trisomy 18 or Trisomy 13. Although many of these children will also pass away soon after birth, some may live for months to years. The possibility of life outside the womb, albeit with significant challenges due to serious physical disabilities, is not conveyed in the words “lethal anomaly” or “incompatible with life.”
Isaiah’s Promise is a support group for parents who decide to carry to term their unborn child after a poor prenatal diagnosis. One parent who sought out the help of Isaiah’s Promise reported her experience with the term “incompatible with life.” “When the doctor told me that my baby had a condition that was ‘incompatible with life’, I wasn’t sure what he meant. Did he mean that my baby had already died? I could feel her moving, yet he said she was incompatible with life. What life was he talking about?”
Another mother said, “Once the geneticist used the term ‘incompatible with life’ I felt like it was a death sentence. Here was the expert telling me that my child had no possibility of life. I felt like we had no choice but to terminate the pregnancy. But that meant terminating our baby’s life. We just couldn’t do that.”
Monica Rafie, founder of Be Not Afraid, an internet support service for families who carry to term despite a poor prenatal diagnosis, had this to say, “We were told that our baby had an ‘incompatible with life’ condition, hypoplastic left heart syndrome (HLHS). The OB offered us a few options, including termination. I could not believe my ears. I recall an immediate surge of defiance flowing up in me. It was incomprehensible to me that the OB could so dispassionately tell us we could terminate, as though we could just give up on our baby and move on with our lives. I searched her face, her eyes, looking for some glimmer of appreciation of the weight of the news she had just delivered. It was in vain. It was time to move on alright. I never saw her again.”
The term “incompatible with life” when coupled with a poor prenatal diagnosis and delivered by a healthcare professional can have unintended consequences. Efforts should be made to ensure that all parents who receive a poor prenatal diagnosis have the right to choose to carry their baby to term. The term is at best overused, at worst inaccurate and should be replaced by diagnostic terms that are objective and factual. “Incompatible with life” implies a quality of life judgment that should never be used to label a living, but as yet unborn, baby.
Nancy Mayer-Whittington is the author of “For the Love of Angela”, a book depicting her experience carrying to term her daughter who died shortly after birth from complications associated with Trisomy 18.
** The term is also used to convey information about the viability of life in utero.