Part 3 of 8:
It is difficult to advocate for yourself when you don’t know what you don’t know. Jessica struggled to understand her doctors, handle her feelings, and gain information that could help her cope.
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.
After learning of the prenatal diagnosis of a life-limiting condition for one of the babies I was carrying during my twin pregnancy, the doctors talked to me about the prognosis and my options. This is a really difficult piece of the story to talk about because I wish there were more to say.
Even though I know it was the doctor’s job to make me informed, I feel a sense of guilt, as if I gave consent without doing my job by asking more questions or just knowing more. I wish I had known then what I know now. I wish I had spoken up and demanded more information.
My struggle to understand
The first doctor I spoke with following the ultrasound was so cold to me. Really, they all were, to be honest. The way she explained some of the findings was really confusing, and it wasn’t until I asked what my options were going forward that I began to understand how bad the situation was.
She told me that the prognosis for Maeva, with what turned out to be Dandy-Walker malformation and other complications, was very poor. She said that I had the option to terminate Maeva and continue the pregnancy with Memphis, but there was no sadness or empathy or care from her. It felt like a business transaction.
Concerns for Maeva
It was difficult to get information about Maeva’s life if we were to continue the pregnancy. They couldn’t tell me her life expectancy. They couldn’t tell me if she would or could make it to term. I was given the option to have an MRI to get more information about why this had happened, but the doctors were quick to allude to the fact that testing wouldn’t change anything.
So, I was given the option for more information but, in a way, deterred from actually pursuing that information. Everything I asked seemed to be shut down, and it felt like they were saying that termination was the best option. The differences between early pregnancy termination and waiting beyond 20 weeks’ gestation were not discussed.
Worries for Memphis
I asked if there would be a risk to Memphis if we did terminate Maeva. I was told that there would be a slight risk of preterm labor, which I did in fact experience. Overall, we were ill-informed on all options — and parents need to be fully informed in order to truly consent.
We really did not have a clear understanding on how early pregnancy termination or continuing the pregnancy would affect Memphis. What I know now is that termination was not the safest or the best option from a medical standpoint, it was just an option that happened to be presented to me as the only option.
Things we didn’t realize
Early pregnancy termination in my twin pregnancy had so many ramifications I did not understand. No one explained to me that, if I decided to terminate, I would be considered a high-risk pregnancy, and I would have to travel two hours to the hospital every single week until the end of my pregnancy.
I also would have liked the option to look into organ donation. The extra time carrying my daughter and the possibility of getting to help another family or contribute to medical innovation makes me incredibly emotional to think about. I wish I had had that choice.
A lack of support for me
I was not counseled on the effects that terminating one baby and having to continue to carry them both would have on my mental health. I don’t feel like Memphis’s well-being was considered, and my well-being was certainly not considered. I was not prepared for the intense feelings of grief and sadness.
When I look back on this experience, it really felt like a cold transaction, as if we were with an accountant filling out our taxes. As we met with doctors and talked through everything, it felt as if Maeva was seen as her own entity. She, alone, was the issue. I wasn’t also pregnant with another baby girl. I wasn’t a mother who was about to lose her whole world. Or a person who would be remembering a lost baby for the rest of my life.
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 4 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.