Part 5 of 8:
When it comes to prenatal diagnosis of a life-limiting condition, information is not enough. Parents need to develop perspective on all available options to honor their values with reasonable expectations for their pregnancy.
To read Jessica’s story from the beginning, see Part 1.
A Note to Our Readers: Carrying To Term had the privilege of speaking with and learning from a mother who chose early pregnancy termination following prenatal diagnosis of a life-limiting condition for one of her babies during twin pregnancy. The following conversation addresses difficult subjects that may be triggering.
Jessica speaks with raw honesty and emotion about coping with a prenatal Dandy-Walker malformation diagnosis during twin pregnancy, arriving at the choice to terminate one twin, and being pregnant with the living twin while continuing to carry the body of the twin who died. Her story sheds light on the importance of informed consent, and the tragic experiences that can occur in the absence of informed consent and the shared decision making process between doctor and patient.
Having been together for a decade, there aren’t many topics my husband and I hadn’t spoken about at some point or another. Making big decisions together has always been something we do really well. When we were discussing Maeva’s Dandy-Walker malformation diagnosis and what we thought was the best option for our family, it was very layered and nuanced.
But, after talking with medical professionals, and knowing that they recommended termination, it felt like we had no choice but to terminate. We knew that pregnancy continuation was somewhat of an option, in the sense that we were told that it was possible. We didn’t even know there was a difference between early pregnancy termination and waiting until after 20 weeks’ gestation. We really didn’t feel like we had a choice in the full sense of the word.
Confronting the unknowns
Our doctors told us that Maeva could suffer during the twin pregnancy. There could be diagnosis-related and twin-related complications. I could experience preterm labor, or Maeva could die at any moment in utero. I was told that if she passed away during the pregnancy, I wouldn’t know when she died.
When they told me that, the thought of worrying every moment of every day about when she might die felt terrifying and anxiety-inducing. There was no conversation about possible survival or outcomes after birth. The information was framed in a way that made it seem like termination was the only and best option, even despite the risk of preterm labor as a result of the termination procedure.
Additionally, we had no idea how much our baby girl would suffer and for how long, if she was born alive. The unknown was too much for our hearts to take in this already scary time. So, my husband and I decided to terminate Maeva’s pregnancy and continue Memphis’s.
The weight of decision
While the thought of Maeva passing away without me knowing was awful, the idea that I would actually have to make the decision to end her life felt horrible. I kept thinking about this experience in the context of my son’s pregnancy.
If I had terminated his pregnancy, I wouldn’t have known him or had the close bond that I have with him. Although the situations are entirely different, it was impossible to separate the dreams I had for a future with my son and our girls from the reality of the choice before me.
This would have been an impossible situation with a singleton pregnancy, too, but there is no way to fully articulate the nuances and difficulties of making this choice in the context of twin pregnancy when there are two babies to consider. I felt like I was being forced to pick between my children — which one could live and which one couldn’t. I cannot begin to explain how difficult that is as a parent.
My husband reassured me many times that I wasn’t choosing between my children. I didn’t choose this situation. I wouldn’t get the future I dreamed of with my girls because Maeva was sick and Memphis wasn’t. I wasn’t choosing Memphis over Maeva. I was doing the best I could to handle a diagnosis I never expected and a situation that felt impossible.
We live five hours from any family. We live in a military town, and most of our close, trusted friends had been relocated, leaving us with very little support. We live two hours from the only hospital equipped to treat a high-risk pregnancy, a terminal baby, and possibly a premature but healthy baby as a result of a complex twin pregnancy.
Our son was sixteen months old, just beginning to walk, and he needed so much of our care and attention. We just didn’t know how we would manage a terminally ill baby in the NICU, a newborn, a small toddler, no local support, the financial strain, and the grief of remembering a lost baby.
Only after the termination procedure, I found a friend online who continued her pregnancy with her baby who had a life-limiting diagnosis. I followed her story and learned that her baby lived for about a month. It was not until I learned of her story that I realized this could have been a possibility for us with Maeva.
I saw the decisions she had to make after her baby was born. I saw the memories she got to have with her baby, even though they were difficult and limited. For her, remembering a lost baby was very different than it has been for me. I became painfully aware of what we could have had, and what I needed and wanted.
The thing about hindsight is that it is 20/20. Had we thought about the fact that our family and friends would have traveled to be with us, cook meals for us, and help in any way they could, things might have been so different.
Had we been informed about what life with Maeva, even in the NICU, would have looked like, things might have been different. Had we known that resources like Ronald McDonald House and neonatal palliative care centers exist, things might have been different. But, we didn’t know, and no one told us. That’s why informed consent is so important for parents in situations like the one we faced.
An inability to articulate
What I didn’t fully understand was that the choice was more nuanced than what was being presented. We were not met with empathy as we tried to process the diagnosis and our options. When we had questions or when the information felt incomplete or unreliable, we were never given straight answers or more clarity.
Informed consent would have been monumental for us. I truly felt, in my heart, that continuing the pregnancy was what I needed and wanted, yet I couldn’t articulate it. I did not know how to discuss what I did not know. Every question that I asked my health care team was in an effort to lead to pregnancy continuation, yet I felt very redirected to what turned out to be early pregnancy termination.
Jessica’s story helps raise awareness about the importance of presenting pregnancy continuation as an option to ensure women and families are fully informed about their choices, and able to knowingly consent to the right choice for them.
Check back soon for Part 6 of Jessica’s story. To start from the beginning, see Part 1.
Jessica and her husband Peter are high school sweethearts who have been together for 11 years. Together, they are parents to son Maverick and daughter, Memphis. They are also parents to Maeva, Memphis’ twin sister who was diagnosed with Dandy-Walker malformation, tethered cord, and intrauterine growth restriction during Jessica’s twin pregnancy. Jessica is a stay-at-home mother to her two living children, who understands how important remembering a lost baby can be. In memory of Maeva, Jessica is an advocate for raising awareness about the need for reliable resources to enable informed consent following a prenatal diagnosis of a life-limiting condition. Jessica and her family live in northern Ontario, Canada where Peter is stationed in the Canadian Armed Forces.