Mrs. Jane and her husband sat in a conference room with team of physicians. Just a few weeks earlier, the Janes had arrived at their obstetrician's office for a routine second-trimester ultrasound. Eager to see if they would have a boy or a girl, they instead learned the developing fetus had arthrogryosis, a genetic condition in which the joints of the body become permanently rigid. The fetus's ribs and vertebral column—necessary for breathing—were particularly affected.
Information came at the Janes from all directions. The team of experts explained that, without normal mobility, the newborn's chest wall would be locked in place, making breathing after delivery impossible. Without immediate respiratory assistance by intubation, the infant could suffer permanent neurological injury from hypoxia. There was more: the fetus's abnormally small chin might interfere with intubation, requiring multiple attempts to successfully place the breathing tube.
The neonatologists told the Janes that there was neither a cure nor a therapy to prevent this devastating outcome. However, an option existed that might be used. An innovative procedure called ex utero intrapartum treatment, or EXIT, had been developed to deliver infants with severe neck and chest anomalies. During EXIT, the newborn is delivered in a manner similar to caesarian section, but the umbilical cord is not immediately cut. Instead, the maternal fetal connection remains intact until the newborn is intubated, for as long as several minutes if needed.
EXIT is not a routine procedure, so a multidisciplinary medical team would be involved. Obstetricians would perform the high-risk surgical delivery and manage its associated complications (including the potential for massive maternal hemorrhage). Neonatologists would intubate and assess the newborn after delivery. EXIT requires general anesthesia, so two teams of anesthesiologists—one for the mother, and one for the newborn—would also be on hand. Finally, bieothics consultants would help to identify and resolve any ethical issues arising.
The team cautioned that the EXIT procedure would not guarantee the newborn's survival. Though used successfully for a handful of other indications, EXIT had never been performed on a fetus with arthrogryosis. Nevertheless, the neonatologists hoped for a promising outcome, and no matter what happened, they believed the procedure might help the couple feel that they had done everything possible for their child.
The Janes were also informed of the risks. They understood the serious and potentially deadly danger to the mother of hemorrhage and complications from general anesthesia. But the concern that weighed most heavily on their minds was the real possibility that, despite the best efforts of the medical team and the use of EXIT, their baby might still die shortly after birth, and Mrs. Jane, unconscious from the anesthesia, might miss the few fleeting moments of their daughter's life.
It was at this juncture in the conversation that I met the Janes. I was one of two bioethics consultants involved. As both an obstetrician/gynecologist and a bioethicist, I am in a unique position to help. In the course of my work, I have developed skills that can help orient patients and health care providers lost in the thicket of the complex ethical issues that often accompany reproductive and maternal-fetal medicine.
I've found that maternal-fetal issues tend to provoke strong dichotomous opinions. Positions often become polarized, and conversations devolve into stalemates pitting the rights and interests of the mother against those of the developing fetus. Discussions touching on the subjects of life, reproduction, and rights can quickly move from constructive to destructive, leading everyone astray. In a sense, a bioethics consultant's mission is to serve as a guide for patients, families, and providers, helping them calmly chart a course through the difficult ethical terrain of twenty-first century medicine.
Like many practitioners, I have particular tools available to help navigate such ethically challenging situations. The most trusted item in my toolkit is the process of informed consent. This is for me a compass, which I rely on to find true north when the fog of conflict rolls in. It is critically important in maternal fetal cases, when diverging perspectives and priorities can result in a maze of...