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While pregnant with twin girls, Jessica received a prenatal diagnosis of a life-limiting condition for one of her babies. Her journey through grief has motivated her to help others.
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.
My name is Jessica, and I’d like to share my story. It is one of deep sadness and grief we experienced throughout the process of losing our daughter Maeva, delivering her twin sister Memphis, and being parents to our son Maverick all at the same time.
We are coming up on the one-year anniversary of losing Maeva. Even as we are remembering a lost baby, there still are people in our lives who don’t know the details of our experience. I didn’t share all the details of choosing early pregnancy termination with everyone along the way, mostly because I was scared of being judged for the choice we made.
But, now, after a lot of self-reflection, professional help, and making the choice to lean into my grief, the feeling of being judged — while still present, and a great fear of mine — has diminished. If it takes being judged a few times to help even one family understand informed consent, well then, so be it.
Even when I was expected to be joyful about expecting a healthy baby, I was honest about the fact that I was sad. Honoring and sharing those complex feelings has allowed me to really move through my grief, and be in a place today where I can talk about our loss and share how we might be able to make changes for other families in the future.
Throughout our journey, we shared details with our immediate family, who helped us by supporting us and caring for our son throughout all of our doctors’ appointments. Most of my motivation to reach out and share so openly, now, has come from finding the holes that exist in our healthcare system. There was so much information that we weren’t given.
Why 20 weeks matters
The differences regarding terminology and experiences of loss before and after 20 weeks’ of pregnancy were not explained to us. Maeva’s pregnancy was ended at 19 weeks and 5 days, just two days shy of 20 weeks’ gestation. That means we chose “early pregnancy termination” without realizing the implications.
It is an injustice that we didn’t know that here in Canada, a baby who passes away in utero is considered a “product of conception” until 20 weeks’ gestation. After 20 weeks’ gestation, a baby who passes is considered a stillbirth. Only a stillbirth is registered as a death, and only a stillbirth is given documented proof that the baby existed and entered the world. I cannot explain the heartbreak that comes with not having our baby seen as ours. It can make remembering a lost baby that much harder for parents.
Why informed consent matters
We also weren’t given detailed information about continuing the pregnancy with Maeva. We were not told what Maeva’s life could have and would have looked like if we had chosen to carry her. After asking our health care team many difficult questions, we received very little encouragement to continue both pregnancies.
I was made to feel like termination was the only and best option. I truly wish more counseling had been made available to us to enable informed consent. I wish that we knew about other families who had been in these types of situations and decided to carry to term. I made a choice based on the information I was provided by my health care team that I trusted, and cannot change what was done. I feel at peace most days now, but I feel that it should be the duty of healthcare providers to inform families on all options regarding babies who face life-limiting diagnoses.
Being informed would have made a world of difference to my ability to truly consent. I needed to be empowered to make a fully-informed choice. I needed access to and support from an organization like Carrying To Term. This is why I’m sharing my story. I’m motivated to change this experience for other families. I want to help other families by ensuring that they have all the information possible.
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 2 of Jessica’s story.
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.