Part 8 of 8:
Today, Jessica is doing well and raising her two surviving children. She reflects on listening to your heart and pushing back until you find real answers so you can pursue informed consent.
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.
We, like all excited, expecting parents, were not prepared for the experience of twin pregnancy with a prenatal diagnosis of life-limiting condition. Before the diagnosis of Dandy-Walker malformation for one of my babies, I was so excited to have twin girls.
Nobody tells you that these things happen at all, let alone how to deal with these situations when they do happen. No one tells you what questions to ask or how hard to push for a second opinion. No one tells you how to do your own research, or how important informed consent is for your mental health and emotional well-being.
Fear disempowers us
We trusted our doctors. We trusted that they were giving us all the information that we needed in an unbiased way. We didn’t think we should push too hard, even when we felt like we weren’t getting the whole picture. We were incredibly vulnerable, scared, and overwhelmed. We thought they would help us and ensure that we were fully informed. We gave consent, but we didn’t understand all of the ramifications of our choice.
It wasn’t until later that we learned how many other people have gone through this experience. It wasn’t until later that we learned how much information and how many resources are actually available. It wasn’t until later that I knew that our doctors could have sent us for second and third opinions.
Six or seven months after delivering the girls and dealing with some of the birth trauma, I started working to accept our decision to terminate. Then, I learned new information that really upset me. I learned that not only are there pamphlets and resources available to parents who have received a prenatal diagnosis of a life-limiting condition, there are specific resources for parents like us who have one twin with a diagnosis and one healthy twin during twin pregnancy.
I learned that there are resources to help parents process the grief of losing one twin and bringing home the other. I learned that some surviving twins experience a sense of loneliness and grief over the loss of the twin, even drawing their twin in pictures at school. I didn’t receive any of these resources until six months after delivering my daughters.
I began to really doubt our decision, wondering what else was kept from me. I have since spoken with another maternal-fetal medicine clinic about five hours away from us, and we are considering having a consultation with them to review everything. We have so many questions, and we want some sense of peace. We did the best we could with the information we had, and I have to be okay with that. But, I now have less trust in doctors, and I live with questions that I will never be able to answer.
The 3 takeaways
For any mother and family that is in a similar situation, I think it is important, first and foremost, to listen to your heart. Second, I want you to know that no matter how isolated you feel or how unique your situation may seem, there is someone out there who knows what you’re going through.
Finally, you will never regret being informed. You can’t truly consent without being fully informed. Ask all the questions and weigh both sides, even if you feel as though you have already decided. Get second and third opinions. Push back when your instincts tell you to. Do your own research. Ask for help and support.
Our family, today
Our little family is doing well. Maverick turned out to be the best big brother. Memphis has been such an amazing little blessing to us, and her first birthday is fast approaching. Remembering a lost baby is part of our family story. We honor Maeva and keep her close to us daily. Her ashes rest peacefully beside Memphis’ crib. Our girls are together, and that brings us peace.
My husband and I are about to celebrate our fourth wedding anniversary. I have recently become a volunteer with the Pregnancy and Infant Loss (PAIL) Network, and I’m hoping to host a memorial run for Maeva this year!
Although I am so grateful to be in a positive place in my life, I still have a constant ache in my heart. When my little family is all together, it feels like I’m always missing something. I know that’s Maeva, and that feeling is what motivates me to find the light in myself again and do what I have to do to raise awareness and support for other moms.
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.
To read Jessica’s story 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.