Part 4 of 8:
Accepting the diagnosis, and learning about that diagnosis, can be a difficult journey for parents. Jessica recognized her need for support from women with twin pregnancy who had faced choices around early pregnancy termination.
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.
Losing our daughter Maeva, delivering her twin sister Memphis, and being parents to our son Maverick all at the same time was one of the most difficult journeys of our lives. While we supported each other, my husband and I both had to process complex information and intense emotions — and we each had to do so in our own way.
We had a follow up appointment where an ultrasound of Maeva’s brain was performed. This gave us a formal diagnosis of Dandy-Walker malformation, tethered cord, and early onset intrauterine growth restriction (IUGR). We then met with a genetic counselor who detailed chromosomal abnormalities we would be looking for if we underwent an amniocentesis.
An end of denial
Following that ultrasound, my husband shared with me that he hadn’t truly believed that the news that something was wrong with Maeva was true until then. The news was just too overwhelming and devastating for him to process and come to terms with until he heard it himself from the doctors.
For me, getting the formal diagnosis felt like the fact that something was wrong with my baby was being rubbed in my face. The findings were still the same — the only difference now was that we had a name for each issue.
As we sat there, listening as the doctor gave us the news, that appointment felt like a cold interaction. I’ve said before that our doctor appointments often felt as if we were with an accountant filling out our taxes.
We didn’t feel much empathy from our doctors that day. I think that is what made me realize that I would have to look out for my own heart. That is when and why I sought out additional counseling and support on my own.
The need for specialized support
After receiving the formal diagnosis, I searched the internet high and low for resources or similar stories to mine to see if there was any hope. I wanted to see what the outcome was if we did not terminate. I wanted to hear from women who were remembering a lost baby. I hoped to even just find someone to connect with.
My hospital provided very little support or information, so I had no luck finding someone in a similar scenario. I did, however, immediately seek the help of a counselor, and I later found a network of pregnancy and infant loss families to connect with.
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 5 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.