Part 6 of 8:
Prenatal diagnosis of a life-limiting condition is traumatic for parents with singleton pregnancies, but Jessica found that there are extra difficulties in a twin 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.
My pregnancy with my twin girls was a very wanted pregnancy. The moment I found out that we were having twins, I was so excited. From the beginning, our girls felt like a unit: twins. I never once thought of how difficult twin pregnancy might be.
Then, one of our girls was diagnosed with the prenatal, life-limiting condition of Dandy-Walker malformation. This is by far the most difficult situation I have ever experienced. Before it happened, I truly couldn’t imagine the reality I lived through was a possibility.
Raw emotions
It is so very hard to admit my real feelings the night before the termination procedure. But, I told my husband that if we were terminating Maeva, I felt that I wanted to terminate Memphis as well. It makes me sad to think back on those moments, and I think it really upset my husband to hear that I was considering that.
When I considered terminating Memphis, too, it was because the thought of my daughters being together and Maeva not being alone seemed like a small comfort. My husband didn’t know what to say or how to support me. I didn’t know what the right answer was in those moments.
I was too embarrassed to even mention those thoughts to my doctors or to anyone else. But I wonder if I had been honest about how I was feeling, maybe someone would have told me that I wasn’t the first to think that. Or, that these thoughts were normal given what I was facing.
Inability to be present
To be honest, before the early pregnancy termination procedure, I’m not even sure I thought about what it would be like to continue to carry Maeva after she had passed. I don’t think it registered before the procedure that I would be carrying and delivering a baby who had passed. No one spoke to me about the feelings that would arise from carrying a terminated baby for months after the procedure.
Looking back, I find it really hard to remember being pregnant afterwards. It’s very difficult to explain, because I know that I still carried Maeva in my belly, but it was almost like I stopped visualizing her in there after she passed away. I cannot remember thinking about how she was positioned or what she may have looked like.
I feel like the trauma of what we had been through and the choice we had to make blocked my mind from going there or is blocking me from remembering what it was like during that time. I do remember that it really bothered me when people would touch my belly, aside from my husband or son. It was deeply disturbing to share that connection with anyone, even if they knew what had happened. It felt too personal and vulnerable.
Loss of connection
Nothing prepares you for remembering a lost baby while continuing to be vulnerable and sharing your body with another baby. I felt a deep longing, and I began to miss Maeva immediately after the procedure. It is a very difficult thing to explain, as I still physically carried Maeva’s body, but I felt that her soul was no longer close.
Some of my friends expressed immense empathy and sadness over what it must have been like for me to carry both of my babies until delivery. For me, having them both there physically wasn’t the difficult part; it was the feeling of her soul not being with me that was devastating. Nothing prepares you for that.
Struggling with depression
Nothing prepares you for the depression, either. I wasn’t sure that my depression and grief would ever end. I don’t know if I could ever explain in words how this decision broke my heart. I don’t think I can fully articulate how confusing it all was.
I couldn’t dive into exercise for a release. I had to continue to eat to sustain and nourish Memphis. I couldn’t drink a glass of wine to relax. I couldn’t escape into work to help me cope because no one would hire me at nearly six months pregnant. I wanted to run away from it all, but it was impossible. I just had to get through it.
The importance of tangible memories
We didn’t get to experience parenting Maeva. We didn’t get to make memories with her. The truth is, I still wrestle with complex questions and emotions, and I still struggle with feeling responsible for ending a very, very wanted pregnancy.
As the pregnancy progressed, I became more involved in online support groups. I made connections with moms who had decided to carry to term and those who did not. The more I learned the details — no matter how heartbreaking — the more I learned how absolutely essential in the grieving and healing process it is to have tangible memories to process the loss of a child.
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 7 of Jessica’s story. To start from the beginning, see Part 1.
About Jessica
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.