A Note to Our Readers:
Carrying To Term had the privilege of speaking with and learning from a mother who did not choose pregnancy continuation following a diagnosis.
Jessica, while pregnant with twin girls, received a prenatal diagnosis of a life-limiting condition for one of her daughters. She speaks with raw honesty and emotion about the unique challenges of a prenatal diagnosis in a twin pregnancy, arriving at the choice to terminate her one twin, the experience of being pregnant with the living twin while continuing to carry the body of the twin who died, and her interactions with her doctors.
We believe Jessica sheds light on the tragic experiences that can occur as a result of a breakdown in doctor-patient communication. Jessica’s story helps us raise awareness about the importance of presenting pregnancy continuation as an option to ensure that women and families are fully informed about their choice.
The following conversation addresses difficult subjects that may be triggering.
Before we walk through your story, would you share why you have decided to share your story now? What motivates you to share about the experiences you navigated?
Throughout out 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. I have also shared most of our story on social media, focusing on the 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. I was honest about the fact that I was sad, even when I was expected to be joyful about expecting a healthy baby. 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.
We are coming up on the one-year anniversary of losing Maeva, and there still are people in our lives who don’t know anything more then we lost a baby. I didn’t share all the details 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, well then, so be it.
I think that most of my motivation to reach out and share so openly now about our story has come from finding the holes that exist in our healthcare system. There was so much information that we weren’t given. 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, and it is an injustice that we didn’t know that here in Canada a baby who passes is considered a “product of conception” until 20 weeks’ gestation. After 20 weeks’ gestation, a baby who passes away in utero 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.
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, and I truly wish more counseling had been made available to us. 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. I cannot change what was done, and I feel at peace most days now, but I feel that it should be the duty of health care providers to inform families on all options regarding babies who face life-limiting diagnoses.
I know that being informed would have made a world of difference. 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.
“I feel that it should be the duty of health care providers to inform families on all options regarding babies who face life-limiting diagnoses. I know that being informed would have made a world of difference. I needed to be empowered to make a fully-informed choice.”
Tell me a bit about your pregnancy with Memphis and Maeva. What were the early experiences like before the diagnosis?
It took quite some time for us to conceive our first child, our son Maverick, because I have endometriosis. So, when we decided to get pregnant again, we thought it would take a while, too, but we had only been trying to conceive for a month when we found out that we were expecting again in November of 2017.
From the beginning this pregnancy was so different, and I was hospitalized very early on with hyperemesis gravidarum, or severe nausea and vomiting. It was during that hospital visit that we learned that we were expecting not only one but two babies. I had felt in my heart that I would have twins long before we even became pregnant with our girls, so it felt right when we found out.
While we were in the hospital, an ultrasound showed that Twin B, who we later named Maeva, was measuring about a week behind Twin A, who we named Memphis. I felt some worry, but my doctor was not able to give me a solid reason why Maeva was measuring behind. The fact that my doctor did not really seem too concerned put my husband and I at ease.
What was the experience of learning the news about Maeva’s diagnosis like for you?
I have always been a very self-sufficient person. I really value my independence and take pride in that as a military wife. With my first pregnancy, we had only known I was pregnant for a week before my husband had to leave for six weeks for work. When he was home, his work schedule didn’t allow him to make any of my doctors’ appointments, but that was not an issue for me. I thought to myself, “all women do this; this isn’t that difficult. I just have to do whatever I have to do.” It felt like an extension of my independent personality.
So, when I was sent to a larger hospital system two hours away from our home for my anatomy scan with Memphis and Maeva, I didn’t think twice about handling that alone. My husband was able to take some time off that day, but we had never left our son with anyone before. We knew we would be nervous leaving our son for the first time, and it seemed like too much to try to keep a toddler busy for so many hours on the road and then at the hospital. We thought this appointment would be just another appointment to get through—that it wouldn’t be any different—so we decided that it would be better if my husband spent the day at home playing with our son while I went to the appointment alone.
Immediately following the scan, a doctor came into the room to discuss what they had found during the anatomy scan. The doctor told me that Memphis was perfectly fine, but Maeva was missing a part of her brain. I learned that they found some abnormalities with her spinal cord, too. She was also measuring three weeks behind what she should have measured at for her gestational age.
It was very difficult to be given this news alone. I wanted to cry, but I knew I was responsible for hearing and understanding what the doctor was telling me. I had stay present and process the details so that I could relay that information to my husband. But, as I sat there, listening to the devastating news, it felt like I went on autopilot. I was just going through the motions. I was alone and devastated, and I still had to face the long drive home.
Pregnancy, whether it is filled with complications or not, is important, and we should all be supported in whatever ways possible. Knowing what I know now, I wish I had taken a friend with me to the appointment, regardless of the results of that appointment. Since I did learn the devastating news that our daughter had a diagnosis, having a friend there would have been so helpful. That person would have been there to share in the difficulties of the day. That person could have helped me listen and take notes and relay that information to my husband. I could have cried and taken the time to process what I had just heard instead of trying to be strong enough to make it home safely.
I really wish that day didn’t happen to just me. It is one of the loneliest memories, and it was very traumatic. When something so major happens, it is hard to be the only one who has gone through it. I wish I had someone with me to take care of me in those moments.
After learning the diagnosis, the doctors talked to you about the prognosis and your options. What was that experience like for you?
This is a really difficult piece of the story to talk about because I wish there were more to say. I wish I had known then what I know now. I wish I had spoken up and demanded more information. 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 was very poor, and 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.
I asked if there would be a risk to Memphis if we did terminate Maeva, and I was told that there would be a slight risk of preterm labor, which I did in fact experience. I was given the option to have an MRI performed 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.
It was difficult to get information about Maeva’s life if we were to continue the pregnancy. They couldn’t tell me a life expectancy. They couldn’t tell me if she would or could make it to term. Everything I asked seemed to be shut down, and it felt like they were saying that termination was the best option. 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 was not prepared for the intense feelings of grief and sadness.
Overall, we were ill-informed on all options, and we really did not have a clear understanding on how 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.
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. I don’t feel like Memphis’s well-being was considered, and my well-being was certainly not considered. 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 wish I had been given more information. Even though I know it was the doctor’s job to inform me, I feel a sense of guilt, as if I didn’t do my job by asking more questions or just knowing more. 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.
What was it like sharing the news with your husband? Was he able to process the news? Did you tell anyone else?
I called my husband as I left the hospital, but the most I could really manage to say was that something was wrong with one of our babies. He was worried about me driving home in the snowy conditions, so he didn’t want to go into details until I got home. After I spoke with my husband, I called my mom. She, too, was worried about my long drive home, so she didn’t want to ask too many questions. I just felt at a loss. I was all alone, and my family was worried for me and wanted me to focus on the drive. We were just all in shock.
Once I got home, I was able to tell my husband all the details. I knew he was in shock. I was in shock. I knew he was struggling to come to terms with it. I think we were both in denial, him especially. But, through all the confusion, heartache, and difficulty, he was extremely supportive as we tried to process and prepare for the next steps.
“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 was not prepared for the intense feelings of grief and sadness.”
What happened after your anatomy scan? Did you get more information about Maeva’s diagnosis? What was that like for you?
We had a follow up appointment where an ultrasound of Maeva’s brain was performed. This ultrasound gave us a formal diagnosis of Dandy-Walker malformation, tethered cord, and early onset intrauterine growth restriction (IUGR). Following that ultrasound, we then met with a genetic counselor who gave us some insight about what chromosomal abnormalities we would be looking for, if we underwent an amniocentesis.
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 the news 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.
That appointment also felt like a cold interaction. We sat there, listening as the doctor gave us the news. We didn’t feel much empathy from our doctors that day, and 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.
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 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.
Following the diagnosis and based on the information you were given, you and your husband chose to terminate Maeva’s pregnancy and continue the pregnancy with Memphis. What was that process like for you?
Having been together for a decade, there aren’t many topics that my husband and I hadn’t spoke about at some point or another. Making big decisions together has always been something we do really well. When we were discussing Maeva’s diagnosis and what we thought was the best option for our family, it was very layered and nuanced.
This would have been an impossible situation with a singleton pregnancy, too, but there is no way to fully articulate the nuances and difficulties of making this choice when there are two babies to consider. I felt like I was being forced to pick between my children- which one could live and which one couldn’t. I cannot begin to explain how difficult that is as a parent. My husband reassured many times that I wasn’t choosing between my children. I didn’t choose this situation. I wouldn’t get the future I dreamed of with my girls because Maeva was sick and Memphis wasn’t. I wasn’t choosing Memphis over Maeva. I was doing the best I could to handle a diagnosis I never expected and a situation that felt impossible.
When my husband and I started the process of making a decision, we really didn’t feel like we had a choice in the full sense of the word. We knew that pregnancy continuation was somewhat of an option, in the sense that we were told that it was possible. However, they told us that Maeva could suffer during the pregnancy, there could be diagnosis-related and twin-related complications, I could experience preterm labor, or Maeva could die at any moment in utero. I was told that if she passed away during the pregnancy, I wouldn’t know when she died. When they told me that, the thought of worrying every moment of every day about when she might die felt terrifying and anxiety-inducing. There was no conversation that talked about possible survival or outcomes after birth. The information was framed in a way that made it seem like termination was the only and best option, even despite the risk of preterm labor as a result of the procedure.
While the thought of Maeva passing away without me knowing was awful, the idea that I would actually have to make the decision to end her life felt horrible. I kept thinking about this experience in the context of my son’s pregnancy, and if I had terminated his pregnancy, I wouldn’t have known him or had the close bond that I have with him. Although the situations are entirely different, it was impossible to separate the dreams I had for a future my son and our girls from the reality of the choice before me.
What I didn’t fully understand was that the choice was more nuanced than what was being presented. We were not met with empathy as we tried to process the diagnosis and our options. When we had questions or when the information felt incomplete or unreliable, we were never given straight answers or more clarity. More information would have been monumental for us. I truly felt, in my heart, that continuing the pregnancy was what I needed and wanted, yet I couldn’t articulate it. Every question that I asked my health care team was in an effort to lead to pregnancy continuation, and I felt very redirected to termination.
After talking with medical professionals and knowing that they recommended termination, my husband and I sat down to talk through the emotional toll and logistics of this decision. It still felt like we had no choice but to terminate. We live five hours from any family. We live in a military town, and most of our close, trusted friends had been relocated, leaving us with very little support. We live two hours from the only hospital equipped to treat a high-risk pregnancy, a terminal baby, and possibly a premature but healthy baby. Our son was sixteen months old, just beginning to walk, and he needed so much of our care and attention. We just didn’t know how we would manage a terminally ill baby in the NICU, a newborn, a small toddler, no local support, the financial strain, and the grief. Additionally, we had no idea how much our baby girl would suffer and for how long, if she was born alive. The unknown was too much for our hearts to take in this already scary time. So, my husband and I decided to terminate Maeva’s pregnancy and continue Memphis’s.
But, the thing about hindsight is that it is 20/20. After the procedure, I found a friend online who continued her pregnancy with her baby who had a life-limiting diagnosis. I followed her story and learned that her baby lived for about a month. I saw the decisions she had to make after her baby was born. I saw the memories she got to have with her baby, even though they were difficult and limited. It was not until her story that I realized this could have been a possibility for us with Maeva. I became painfully aware of what we could have had and what I needed and wanted.
Had we been informed about what life with Maeva, even in the NICU, would have looked like, things might have been different. Had we known that resources like Ronald McDonald House and neonatal palliative care centers exist, things might have been different. Had we thought about the fact that our family and friends would have traveled to be with us, cook meals for us, and help in any way they could, things might have been so different. But, we didn’t know, and no one told us.
What was it like to continue to carry Memphis and Maeva after Maeva had passed away?
The night before the procedure, I told my husband that, if we were terminating Maeva, I felt that I wanted to terminate Memphis as well. That is so very hard to admit, as this was a very wanted pregnancy. The moment I found out that we were having twins, I was so excited, and I never once thought of how difficult it would be. I truly couldn’t imagine that this reality was a possibility. Our girls felt like a unit; twins. 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.
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. He didn’t know what to say or how to support me, and 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.
This is by far the most difficult situation I have ever experienced, and to be honest, before the 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, and now, 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.
Nothing prepares you for grieving for a 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.
Nothing prepares you for the depression. 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.
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. 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, and the more I learned the details—no matter how heartbreaking they may be—the more I learned how absolutely monumental in the grieving and healing process it is to have tangible memories to process the loss of a child. 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.
“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. It was the feeling of her soul not being with me that was devastating. Nothing prepares you for that.”
Tell me about delivering your girls. What was that experience like for you?
I was able to carry both of my girls until thirty-one weeks when my water broke. I was hospitalized in an effort to stop my labor, and I stayed in the hospital until I went into active labor at thirty-three weeks. I delivered my girls by emergency C-section, and it was during this experience that I really began to see the realities of the choice we made.
Since we terminated Maeva’s pregnancy before twenty weeks, she was never recognized as a stillborn baby. She was not given any documentation recognizing that she lived at all; that she was a person. As a result, Memphis is considered a singleton baby, not a twin. My health care team did not recognize Maeva as a baby. She was considered a product of conception, and the assumption was that, as a product of conception and not a baby, I wouldn’t be attached to her. So, I was not asked if I wanted to see her. It never crossed my mind to ask to see her because of how the health care team handled her at the time of her birth but also because of how the doctors had talked about her and her condition at birth at the time of the termination.
What doctors seem to miss in this situation is that there is some sort of intangible attachment that happens between a mother and a baby, and that attachment was there for me with both of my girls. It was never recognized by my health care team. While it would have been difficult to see her, it would have been my only time with my baby. It should not have been up to my doctors to make that decision for me. We are living in a society that deems anything that makes us uncomfortable as bad and to be avoided at all costs. What my doctors didn’t understand is that I had already lived through the most painful days of my life, and no matter what she looked like, she was baby. Seeing and holding her would’ve helped me know that she was real.
Six months later, when I spoke with the hospital’s bereavement committee, I learned that I could have seen her. Learning that has been one of the hardest things since her birth because it felt like another experience of not being informed. It’s another loss. Sometimes, I feel a little bit crazy for mourning a baby that I was never able to see, but she was a person and deserves to be mourned. I wish I had had that option.
Knowing what I know now, it makes me very sad to think about the fact that I missed my chance to see and hold my baby girl. I think being able to see Maeva might have resolved a lot of “what ifs” for me. It would have given me a priceless memory, allowing me to say hello and goodbye. Some days, this experience feels like a dream because I don’t have anything tangible to hold on to, and I think getting to hold her would have helped this feel more real. I am not the only woman to experience this loss, and it’s something that has to change.
Having experienced all that you have, what advice do you have for other families navigating a prenatal diagnosis of a life-limiting condition?
We, like all excited, expecting parents, were not prepared for this experience. Nobody tells you that these things happen, 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. 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 for information, 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 and not making a jump decision.
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. 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.
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. 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.
“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.”
As you and your family are approaching the one year anniversary, can you share how you are all doing now? How do you include and honor Maeva?
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. 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, and 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.
WHO WE ARE
Jessica and her husband Peter are high school sweethearts and have been together for eleven years. Together, they are parents to their two-year-old son Maverick and their eight-month-old 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 pregnancy. Jessica is a stay-at-home mother to her two living children, and now, in memory of Maeva, Jessica is an advocate for raising awareness about the need for reliable resources and comprehensive information following a prenatal diagnosis of a life-limiting condition. Jessica and her family live in northern Ontario, Canada in a small military town, as Peter is in the Canadian Armed Forces.
Carrying To Term is a national 501(c)(3) nonprofit organization dedicated to broadening access to non-directive educational, logistical, and emotional support resources for prenatal diagnoses of life-limiting conditions. For more information, please visit www.carryingtoterm.org.