Loving Care Amidst Perinatal Loss
Why We Need Healthcare Institutions to Change
Editor’s Note: This post is a part of a series of responses to Thana de Campos-Rudinsky’s essay “From Grief to Grace: An Ethics of Love for Institutions Responding to Perinatal Loss.” The series is curated by Alessandro Rovati, the Associate Editor of the Journal of Moral Theology.
In “From Grief to Grace: An Ethics of Love for Institutions Responding to Perinatal Loss,” Thana de Campos-Rudinsky provides a powerful reflection on the institutional changes required in healthcare to better meet the needs of those facing perinatal loss. Campos-Rudinsky shares her own experience of grief and perinatal loss, describing what it reveals about larger issues relating to supporting parents. As a corrective response, she offers an institutional ethic of love. Campos-Rudinsky’s primary concern is to support the journey from grief to grace: “Grace, then, is not the erasure of sorrow but its transformation within a community of care. It is what becomes possible when institutions are animated by love, and when love takes form as shared responsibility for one another’s dignity and flourishing.”
Campos-Rudinsky starts by defining three terms that are deeply related to grief: loneliness, hope, and love. Perinatal loss, as Campos-Rudinsky explains, is often hidden and lonely. She defines loneliness as “a specific form of suffering marked by a profound lack of connectedness—not merely the absence of social contact, but the absence of true belonging grounded in mutual care.” In my own experience, the grief of perinatal loss is compounded by loneliness and isolation because many people don’t openly talk about it and because it has received little attention in theological scholarship. As Campos-Rudinsky explains, “The most fundamental way to counter loneliness is not through efficiency or technical competence, but through love—understood as attentive accompaniment.” By sharing her story, Campos-Rudinsky brings her experience into view and takes the first step toward dismantling loneliness, inviting others to share their stories and to be part of others’ stories.
The power of shared storytelling and story-holding is beautifully expressed in a recent essay, “Losing: A Personal History,” written by my friend Rachel Teubner, who describes the pain of multiple miscarriages: “It was a terrible grief, one that joined me to so many parents and that joins them to me still.” When I ran into Teubner shortly after the piece was published, I hugged her and shared my miscarriage story, feeling comfortable to name the pain that “joins” us. She told me that many acquaintances and friends have reached out to her since writing the piece, thanking her and sharing their stories. Through these exchanges, the loneliness around perinatal loss begins to lift as what was once hidden comes into view, one disclosure, hug, or text message at a time.
Assessing how the hospital fell short in attending to her needs (and the needs of others), Campos-Rudinsky develops “three interdependent pillars of the framework of Ethics of Love for Institutions:”
intentional presence: presence that is both committed and nonassuming, allowing space for both solitude and accompaniment;
sensible care: care that is both universal and personal, allowing reasonable flexibility within protocols to meet each family’s unique needs; and
communal responsibility: responsibility that is both shared and differentiated, fostering collaborative decision-making grounded in the complementarity of expertise between families and providers.
These are beautiful guidelines for how to offer compassionate and loving care, and their power becomes clear when they are embodied in practice. They seem to closely mirror the kind of care my former Jesuit Volunteer Corps manager received while navigating the diagnosis of thanatophoric dysplasia when she was 19 weeks pregnant with her second child, as chronicled in the Baltimore Sun. Thanatophoric dysplasia is a rare genetic disorder in which the ribs don’t grow properly and obstruct the heart and lungs. The diagnosis meant Mohler’s baby would be stillborn or die shortly after birth. Mohler and her family received support from a social worker at Gilchrist Kids, a perinatal hospice unit within a local hospice. The hospice care she received seems to embody the loving response Campos-Rudinsky rightly argues should be available to all: “Love means being wholeheartedly there for the one who suffers, without assuming a paternalistic posture that overpowers her agency.”
The preparation Mohler received from Gilchrist Kids allowed her and her family to move toward grace through care that was aligned with the pillars Campos-Rudinsky proposes. Mohler was met with “intentional presence,” especially by the Gilchrist social worker who saw Mohler and her family periodically, encouraging them to bond with the baby and make memories in utero. Mohler received the “sensible care” Campos-Rudinsky speaks of and was empowered to make decisions about labor and delivery and to exercise agency over the time spent with the baby during his short life. And Mohler was part of a care team that took “communal responsibility,” working closely with Mohler and the social worker. The baby, Joseph Angelo Mohler, lived for one hour during which he was baptized, and the Mohlers had time to take photos with family and the social worker and to make molds of the baby’s feet and hands. Of that day, Mohler says, “December 13th was an amazingly grace-filled and peaceful day full of love. Because we had good care and we were prepared, the hour we spent with our son was truly one of the most beautiful and meaningful of my life.”
My own experience of perinatal loss reveals structural issues and a reliance on community support, similar to what Campos-Rudinsky describes. This, along with her interview and focus group work, should confirm Campos-Rudinsky’s sense that her experience is both particular to her and also indicative of issues that require a structural response to ensure good and universal care. My miscarriage was found during a regular ultrasound when my husband was abroad. I had to resist the paternalism Campos-Rudinsky speaks of, firmly letting the care team know that I would be waiting for my husband and only making plans until after we could return together to confirm there was no heartbeat. Outside of the hospital system, I found intentional presence. In my case, from our parish priest who prayed for me over breakfast and made me eggs and toast, from my mom who flew in from out-of-state to be with me while my husband made the trek home, and from friends who called or sent cards. Communal decision-making spread beyond the hospital to the local cemetery our priest connected us with that organized the burial of the remains. After the burial, I bought a charm in honor of the baby for a bracelet that I wear regularly. While I found loving care outside the hospital system, Campos-Rudinsky challenges healthcare institutions to assume responsibility for providing such care.
Campos-Rudinsky deserved better care, and I admire her efforts to work for those who are coming after her. I agree that her suggested pillars offer a profound and necessary institutional response to meeting the needs of those facing perinatal loss. I do wonder, however, whether love is a tall order for a central ethic in medicine, and I don’t know whether it is fitting for all aspects of healthcare. But that just makes me want to read Campos-Rudinsky’s new book more, as I am sure it will be, like her article, thoughtful and thought-provoking.
Editor’s Note: For more conversations with the Journal of Moral Theology’s authors and responses to their essays, check out HERE.
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