Please welcome author Priscille Sibley, author of The Promise of Stardust, to the blog. Priscille's novel is a haunting and unforgettable debut novel about life and death and love, set against a moral dilemma that may leave you questioning your own beliefs. When the sory of Marlise Munoz recently came up in the news, Priscille wrote this beautiful piece about the difficulty of what was once fiction playing out in real life.
A terrible and personal tragedy has occurred to Marlise Munoz and her family. A few months ago, she and her husband Erick were simply a young married couple, parenting a toddler and expecting their second child. Now they are at the center of a legal controversy with some of the most divisive issues of our time – the right to live and the right to die. Worse yet, state mandated regulations dictate that they have no choice.
In late November, Erick Munoz found his wife unresponsive on their kitchen floor. He summoned emergency help. She was rushed to the hospital. Doctors believe a pulmonary embolism (a blood clot to the lung) caused her loss of consciousness and deprived her of oxygen. Attempts to resuscitate her came too late, and she was declared brain dead. Ordinarily once brain death is determined, the deceased is disconnected from life support. However, in the State of Texas (about thirty states have such regulations) law forbids the removal of life support when a woman is pregnant. The law goes so far as to nullify a woman’s advance health care directive and it supersedes the family’s wishes. Erick Munoz and Marlise’s parents do not believe that her body (some go so far as to use the inflammatory term corpse) should be kept on life support, even under these circumstances. But why? Marlise was a mother. Wouldn’t she want her body to remain on life support for the sake of her child? Her family doesn’t believe so, and they have cause for concern.
For the past month I’ve been watching the news about Marlise Munoz unfold, and the story feels all too familiar because it is so much like what unravels in my novel. Naively, I didn’t expect the situation would really happen. The premise for The Promise of Stardust was a ‘what if’ scenario. Yes, I verified that a pregnant woman, brain dead or in persistent vegetative state, could give birth – possibly. There had been cases. For the sake of fiction, I made the matter contentious; a family is torn apart by the end-of-life issues. Some of the characters believe their daughter/sister/wife should remain on life support for the sake of the child she is carrying. Others adamantly oppose. Unable to solve the problem among themselves, they land in a courtroom. What’s happening now in Texas to the Munoz family is not the same, but it’s similar enough that my heart is breaking for them.
Both Marlise and Erick Munoz were paramedics. They knew the harsh realities and toll that a medical crisis could take on a human body. She fully understood that people don’t always wake up from accidents or from a medical crisis unscathed. They had discussed whether or not they wanted life support used to extend their own lives. Marlise and Erick agreed that they wanted to die in peace. But what about the baby/fetus? No one knows what harm the hypoxia (lack of oxygen) might have caused to the developing fetus.
How likely is it that the fetus can 1) survive and 2) have a good quality of life after enduring such a hostile gestation?
According to this study, between 1982 and 2010, researchers found thirty cases of non-traumatic brain death in pregnant women. Out of a sample of nineteen cases, 12 viable infants were born that survived the neonatal period (which means that they survived what would normally be the first month of life – or until a gestational age of 44 weeks.) But their long-term development has not been tracked. Marlise was only fourteen weeks pregnant at the time of her death – seven weeks ago. Now at twenty-one weeks, the fetus is not yet viable.
I am a neonatal intensive care unit nurse and have been for more than twenty-five years. As such, I have very mixed feelings about this entire situation. I love babies. I regularly take care of premature infants. Many times I have held a twenty-four week gestation infant in my hands. I’ve seen very, very premature babies do well. I’ve also seen premature infants suffer and die or become disabled. Under the best of circumstances, resuscitation of a fetus prior to twenty-three weeks is ethically questionable. Should s/he live, the odds are very strong s/he will have major life-long disabilities. At the very least the premature infant will undergo months of intensive care hospitalization and painful procedures.
At twenty-five weeks gestation, the chances improve, but even so, many do not fare well. They generally spend months in the hospital. Viability is not something that switches on and off. It’s a progression. A premature infant can come out looking very fetal. His/her eyes may still be fused. His skin may be thinner than tissue paper, nearly transparent and subject to breakdown. His brain may hemorrhage. The likelihood of survival is not simply a matter of dates. The more premature the infant the higher the risk, but even a preemie born at thirty-four weeks can have lungs that are not ready to function on their own. And it isn’t just good lung development that ensures survival. Everything about a preemie is at risk. These are vulnerable little beings. In the articles and interviews I’ve seen, Erick Munoz has expressed concern about that the hypoxia (low oxygen levels) that killed his wife, may have damaged their developing child. It may have. One pundit on the news said, well, he’s just worried that the child won’t be a perfect. No. He’s worried about the quality of life the child will have should s/he survive. He’s a grieving husband, the father of a toddler and an unborn child. I loathe that he is being vilified.
I found out about the Texas law when I was doing my research for The Promise of Stardust. I am deliberately choosing to ignore the feminist issues in this tragedy. I will only say it horrifies me that a woman loses her right to self-determine her end of life medical course when she becomes pregnant. Some readers thought I took a neutral stance in my novel. Others were heartily offended, believing the novel was lopsidedly pro-life. Some hated the mother-in-law because she was pro-choice. I was writing about a family divided by a tragedy. None of them were meant to be villains. None of them were meant to be right or wrong. These issues are not black and white.
The Promise of Stardust is a work of fiction. Tragically the fate of Marlise Munoz is not. Whether her baby fares well or dies or is disabled, and whether her family heals or is scarred forever by their grief is not within the control of an author telling a story. I do not have the answers. I would not presume. However, this well-meaning law in the State of Texas, this law which is applied globally and without consideration for the individual or circumstance, this law which takes the decision making power away from the family and the medical professionals is simply, in my humble opinion, wrong. This should be a personal decision, a family decision, a human decision.