By: Sue Hasegawa
In late 2008, my youngest child, Peter, was born into this world and peacefully left it four hours later. His passing was not unexpected as he was diagnosed months prior with full Trisomy 18, where every cell in his body contained an additional chromosome, impacting every organ throughout development. Most babies with this condition die before birth, and surviving infants face medical fragility, disability, and high mortality; however, a tiny minority live into childhood and beyond. My husband and I well understood these statistics, so deciding to continue our pregnancy was not based on unrealistic hopes nor simple moral directives; however, not knowing our own baby’s potential, we elected to let him define his story to its natural end.
Ours was a loving and personal decision as parents, and I acknowledge that others, equally loving, may choose differently, whether to “say goodbye early” or to carry to term and advocate for life-prolonging interventions.
I firmly believe, however, that any expectant parent weighing such agonizing options over a much-desired pregnancy deserves to find compassionate, non-judgmental support.
Years later, A Gift of Time by Amy Kuebelbeck and Deborah Davis was published as a groundbreaking guide for parents carrying to term with personal narratives so that no family should feel isolated in this experience. It’s easy to feel, however, that a devastating prenatal diagnosis seems like a horrendous curse placed upon a pregnancy. Deciding to even undergo testing remains deeply personal as many parents decline for various reasons, either asserting that they “wouldn’t do anything differently” based on the results or believing that testing itself serves a sinister, eugenic purpose.
For us, however, receiving our son’s diagnosis, though shattering, was ultimately a precious gift – one of empowerment, knowledge, and clarity to move forward as a family and partner with our providers.
Due to chance and/or intuition, two publications prior to Peter’s conception set the stage for this pregnancy. The first was a New York Times article from March 13, 2007, describing the emerging perinatal hospice movement which offers parents the option of carrying to term within a loving environment that respects and supports the expectant family. Before reading this piece, I was unaware of this interdisciplinary care model to accompany a family from diagnosis to natural death, reminiscent of other forms of palliative care, and I was profoundly touched by the clear-eyed grace of the families depicted in the article. The other piece appeared in a local bioethics journal and described memorial photography after perinatal loss, hearkening back to post-mortem imagery of the 19th century. The cover photo presented a couple gazing upon their stillborn son, an acknowledgement of both unspeakable tragedy and an affirmation their loving familial bond and made a powerful impression upon me.
What does prenatal diagnosis offer a family? For us, it gave us a chance to better educate ourselves, prepare for possible outcomes, and mindfully determine how we wished to parent our child.
We were fortunate to work with a neonatologist and bioethicist who encouraged us to define our family’s goals for Peter’s life and use them to base treatment decisions. We then constructed a birth and neonatal care plan that reflected levels of intervention that we were comfortable with, and those wishes were conveyed to other neonatologists in the department as we progressed to delivery.
Prenatal diagnosis also gave us the opportunity to shower Peter with gifts and experiences from the heart. While no parent should have to plan for their child’s burial, we sourced an infant-sized walnut casket, prayerfully crafted by monks in Iowa and resembling a jewelry box for our precious baby. As a knitter, I constructed a tiny layette – cardigan, hat, booties and blanket – which was ultimately worn in that beautiful casket. Its intricate lacy pattern served as a meditative, centering exercise for me during those expectant weeks. I also obtained two identical stuffed bears, one to accompany Peter and another to appear with us as a loving remembrance in future holiday photo cards.
Our final months together also allowed us to bond over sensory experiences and make family memories.
As a violinist, I serenaded my unborn baby and surrounded him with the symphonic music of Beethoven, Elgar and Sibelius. Together as a family, we enjoyed a Cubs game at Wrigley Field, hiked the Canadian Rockies, and (against medical advice) thrilled to a ride down a water slide.
Those remaining months also granted us time to gently prepare Peter’s brother. My oldest son had recently turned three, and my husband and I chose to openly discuss with him the gravity of Peter’s condition, areas of uncertainty, and gradually introduce the concept of death in an age-appropriate manner. One day, my critter-loving preschooler spied a spectacular cicada on our backyard fence. We admired its vitality together, but the following day, we found it dead on the sidewalk below. Together, we honored its life by conducting a bug funeral, complete with a viewing in a matchbox casket, a little service, and burial in the backyard. Months later, my son visited and held his brother in the hospital and attended his funeral and burial, events he recalls today. As he matured and reprocessed Peter’s death over time, he has grown to naturally respond empathetically to others who have lost a loved one.
Prenatal diagnosis gave us both time and space to parent our children, initiate the grief process, partner with our providers, and eventually journey forward as a family. It wasn’t perfect, but it granted us a sense of focus that we could not have achieved otherwise.
If you are reading this piece following prenatal diagnosis of a life-limiting condition, the hearts of many parents ache for all that you are experiencing. Please know that you should not feel abandoned or isolated, and we hope that you find all of the support, information, and respect to move forward in a manner that best serves you and your family.
Hoeldtke, Nathan J. and Calhoun, Byron C. “Perinatal Hospice.” Am J Obstet Gynecol, vol. 185, no. 3, September 2001, pp. 525-529.
Kuebelbeck, Amy and Davis, Deborah L. A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life Is Expected to Be Brief. Johns Hopkins University Press, 2011.
Banerjee, Neela. “A Place to Go When a Newborn is Fated to Die.” The New York Times. 13 March 2007, p. A1. https://www.nytimes.com/2007/03/13/health/13hospice.html.
Perinatal Hospice & Palliative Care. Kuebelbeck, Amy, 2018, https://www.perinatalhospice.org.
About Sue Hasegawa
Sue Hasegawa is a former pediatric pathologist in Chicago who experienced four early pregnancy losses and the death of a newborn son to trisomy 18 over ten years ago. She has since volunteered as a companion and advocate for parents expecting a child with a life-limiting condition. Her philosophy is that couples on this journey should never feel abandoned and that they should be able to advocate for their family and partner with providers to make care decisions based upon personal goals.[ssba-buttons]