Our preemie baby died in our arms hours after birth. Here’s how we fought to respect her life until the end
October 21, 2020 (LifeSiteNews) – On the feast of St. Joseph in the year 2016, my wife and I held our baby for the last time. She had been born that morning by caesarian section and immediately placed on ventilation. We only saw her a few times that day in the NICU. My wife nearly passed out the first time we had gone down there after the c-section, so she was not with me when Crescentia was baptized and confirmed by the hospital chaplain.
We knew the little one was not likely to survive. My wife was only at 24 weeks gestation when she went into labor after having spent 3 weeks in the hospital due to preterm premature rupture of membranes (PPROM) at 21 weeks. Those 3 weeks, the doctors told us, were crucial for our baby’s lung development. Amniotic fluid plays a crucial role in this development, and our baby was in short supply.
Early in the afternoon of that day dedicated to the patron saint of a happy death, our daughter began to suffer complications. She was given palliative sedation and removed from the ventilator, dying in our arms within minutes. We buried her a few days later, on the Wednesday of the most sorrowful Holy Week we have ever experienced. We were consoled that our Crescentia Anastasia was increasing to everlasting life (which is the meaning of the name).
I often recall this sorrowful time in my life not only as a bereaved father, but also as a philosopher who has specialized in bioethics. I recall that despite my extensive academic formation in Catholic bioethics, I didn’t know how to evaluate the options the doctors presented to us in the first days of our hospital stay. The anxiety, sadness, and desire for the ordeal just to be over were very intense, and quite ruled out calm reflection.
As it turns out, some of the things we were being advised were contrary to sound principles of Catholic bioethics. This was not surprising, since the hospital was not a Catholic one. But this kind of situation can arise even in that context. So, I write this piece for other parents who — God forbid! — may find themselves in a similar situation, discussing only a couple of moral issues they may encounter.
Principle of double effect
The first moral issue that faces women who experience PPROM is responding to the almost reflexive offer of some health care providers to induce labor. This option is attractive, as it ends the suffering both mother and father experience in this kind of situation. It is not, however, always called for.
In fact, unless there is a serious infection of the woman’s mucous membranes that demands their immediate removal, inducing labor in a PPROM situation is the same thing as a procured abortion. In the case of a serious infection, inducing labor is the means employed to remove the diseased organ of the woman, with the foreseen result that the child will perish. In other words, it is an action with two effects, one of which is good, the other of which is evil.
There are several conditions that need to be met to justify such an action (principle of double effect).
First, the act we plan to do must be good or indifferent in itself.
Once this condition is satisfied (in this case, removal of an infected organ threatening the woman’s life), we can move on to the second: the good we hope to achieve cannot be brought about by means of the evil effect. In this case, a change is introduced into the woman’s body, causing the uterine contractions by means of which the membranes will be expelled. The death of the child follows on this as well, but the child’s death is not the cause of the expulsion of the membranes; the uterine contractions are.
The third condition that now needs to be met is that the good to be achieved is proportionate to the evil effect. In general, moralists judge the good of saving the mother’s life proportionate to the evil of the death of her child. So, it would be licit, but not necessarily obligatory, to have recourse to early induction of labor in this kind of situation.
However, my wife and I were not facing this kind of situation. Yes, her membranes had ruptured, but there was no infection present. Induction of labor was not medically indicated. The only effect of inducing labor at that point would the expulsion and death of our lovely daughter.
So, on the third day of our hospital stay, these considerations came to mind, and I was able to articulate to myself, to the nurses, and to the doctors why we would not be accepting their offer to alleviate our suffering by aborting our child.
Ordinary and extraordinary means to save a life
This stability of mind came just in time to hear more bad news. There was too little amniotic fluid for our little girl’s lungs to develop properly. They would do what they could, but the prognosis was bleak. It was time now to talk about ordinary and extraordinary lifesaving means, as well as palliative care.
While a person is obliged to make use of ordinary means to keep himself (or others) alive, it is morally licit to decline extraordinary means. What makes a means extraordinary or “disproportionate”? The Ethical and Religious Directives of the U.S. bishops say that “[d]isproportionate means are those that in the patient’s judgment do not offer a reasonable hope of benefit or entail an excessive burden, or impose excessive expense on the family or the community.”
Our daughter was likely to have very weak and brittle lungs when she was born. The NICU team explained clearly to us what they would do to help our baby survive, but that in their experience, “heroic” treatment usually ended up bursting the lungs of little preemies, who would then die in greater pain than if left untreated.
We determined that we would stop short of such treatment, recognizing that how they were using the term “heroic” is what Catholic theologians mean by extraordinary or disproportionate treatment.
We determined that if treatment proceeded to that point, we would ensure our baby’s comfort by means of palliative care. The palliative care doctor we consulted with was professional and compassionate, and expressed appreciation at our witness to the value of our baby’s life.
During those first days of inner turmoil, I really could not think straight. I had been completing my doctoral dissertation on the ethics of embryo adoption and embryo rescue that year, and yet I found myself at a loss when confronting a personal crisis.
I remember that at some point I decided to look on the website of the National Catholic Bioethics Center, many of whose materials I was using in my research, to see if I could clarify my mind.
It was an article by Fr. Tad Pacholczyk that pulled me back to myself. His series of articles on issues in bioethics is a great resource for those who find themselves in difficult medical circumstances. I was finally able to thank him in person for his work a year later; he was the external reader for my dissertation defense.
When asked how many children I have, I still find myself hesitating between saying eight or nine. We just welcomed our eighth (or ninth) child into the world at the end of September.
While I still find it uncomfortable to write about this difficult event in my family’s life, I hope that it provides someone, somewhere, with a bit more clarity if they are offered an easy way out of a distressing medical situation. Suffering is not easy, but it is a part of life, and is a test of how much conviction we have in giving witness to its value.