This week, one of the most searing and difficult bioethical cases I have ever encountered was brought to my attention. It involves a premature baby born with serious and substantial developmental anomalies that will in all likelihood cost this little one her life. Before going further with the story, what are most needed at this moment are prayers for Emily (name changed), her mom, and her family. Identifying information has been changed to safeguard the family’s privacy.
Emily was born with over a dozen heart defects, and her trachea and esophagus are joined into one common tube at one point. Because of this defect, the baby can’t eat, as her milk would go into the lungs. She can’t be fed through a tube into the stomach, because any regurgitation would likewise go to the lung. She is on a ventilator with oxygen and receiving morphine, as well as an IV.
When this was called to my attention, I spoke with the mother who was all alone and facing a team of physicians aggressively pushing her to disconnect the baby from life support, telling her that she was making her baby suffer needlessly, that there was no hope for surviving reconstructive surgery. Never mind that morphine attenuates pain and suffering. Second opinions were only sought after the mother’s steadfast refusal to quit on her baby.
I consulted a number of folks who direct organizations in the pro-life movement who could shed light on how to proceed. Legal counsel, medical advice, advocacy, etc., all began to take shape within 24 hours. Researching this defect led to an authoritative team of surgeons who have dealt with this rare condition. They don’t think the baby could survive the surgery. Others have yet to respond.
While things may very well end poorly sooner rather than later, this case along with that of baby Joseph from Canada earlier this year calls out for something new in the pro-life movement.
We need a rapid response team who are known throughout the pro-life movement, who can effect positive intervention within 24 hours. A well-respected physician added to this idea by suggesting that we find one Catholic Hospital, which follows the United States Conference of Catholic Bishops Ethical and Religious Directives for Catholic Health Care Services (https://www.usccb.org/upload/Ethical-Religious-Directives-Catholic-Health-Care-Services-fifth-edition-2009.pdf).
Such a hospital would have an ethics panel whose phone number would be known to all pro-life organizations, and listed in the National Catholic Directory. This hospital would be the place where the hard cases would be referred, and would work with families to arrange responsible second opinions, pro-life legal counsel, and authentic hospice services (as opposed to the thinly veiled euthanasia in many places) when all else fails.
The cases of baby Joseph and baby Emily highlight the difficulties inherent when pro-lifers are forced to scramble in an emergency situation. What is needed is an ethical, moral, humane, streamlined process by a team willing to commit to a lived vision of authentically Christian healthcare in a system going into free-fall. Such a hospital would be a beacon of light in the encroaching darkness.