A WANTED PREGNANCY AND UNEXPECTED NEWS
My name is Jessica Hojsan, and I’m a stay at home mom to my two-year-old son, Maverick and my eight-month-old daughter, Memphis. My husband and I are high school sweethearts, and we have been together now for eleven years. We currently reside in northern Ontario, Canada in a small military town, as my husband is in the Canadian Armed Forces.
Our second pregnancy came as a bit of a surprise in November of 2017. With our son, it took quite some time to conceive due to my endometriosis, but we had only been trying to conceive for a month when we found out we would be expecting yet again.
I was hospitalized very early in my pregnancy with hyperemesis gravidarum, or severe nausea and vomiting. During that hospital visit, we learned that we were expecting not only one but two babies, which was something I felt in my heart long before we had even become pregnant. While in the hospital, an ultrasound showed that Twin B, who we later named Maeva, was measuring about a week behind her twin sister, Memphis. I felt some worry, but my doctor couldn’t give me a solid reason why she was measuring behind. The fact that my doctor didn’t really seem too concerned put my husband and I at ease.
LEARNING THE DIAGNOSIS AND SHARING THE NEWS
I was sent to a larger hospital for our anatomy scan at 17 weeks’ gestation. Since the larger hospital was two hours away, I decided it would be better for my husband and son to spend the day at home playing instead of us trying to keep a toddler busy for so many hours in the car and at the hospital. So, I ended up going to the appointment alone.
Immediately following the scan, a doctor came into the room to discuss the findings regarding Maeva. They told me then that a part of her brain was not present, that they found some abnormalities with her spinal cord, and that she was now measuring three weeks behind her gestational age. I was told the prognosis was very poor, and I had the option to terminate Maeva.
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 had said in order to relay that information to my husband. I felt like I went on autopilot. I was alone and devastated, and I now had to face a long drive home.
I called my husband as I left the hospital, but the most I could really say was that something was wrong with one of our babies. He didn’t want to go into details over the phone because he was worried about my long drive home. Once I was home and able to tell him the details, he was shocked and in denial, but he was extremely supportive during this time.
After I spoke with my husband, I called my mom. She, too, didn’t want to ask too many questions, as she was also worried about my long drive home in the snowy conditions. I felt at a loss. I was all alone, and my family was worried for me and wanted me to focus on the drive.
A FORMAL DIAGNOSIS AND PROCESSING THE NEWS
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 genetics counselor who gave us some insight about what chromosomal abnormalities we would be looking for if we completed an amniocentesis.
My husband shared with me that he hadn’t truly believe that the news that something was wrong with Maeva was true until we went for that follow-up ultrasound. 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 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 found a network of pregnancy and infant loss families to connect with.
MAKING A CHOICE FOLLOWING THE DIAGNOSIS
After asking our health care team many difficult questions, receiving very little encouragement to continue both pregnancies, and getting no information about what life might look like for our baby girl if we continued her pregnancy, we decided terminating would be the path we would choose. I entered a dark depression; one that I didn’t think would ever end. I don’t know if I could ever explain in words how this broke my heart and how very confusing it all was. Feeling responsible for ending a very wanted pregnancy has left me with many complex questions and emotions that I still battle every single day.
Maeva’s pregnancy was ended at 19 weeks and 5 days, just two days shy of 20 weeks’ gestation. Here in Canada, a baby is considered a product of conception until 20 weeks, and anything after 20 weeks is considered a stillborn. A stillborn is registered as a death, and that birth comes with documented proof that the baby had entered the world. I was never informed of the terminology of the two and what difference it would have made in our lives to have our baby seen as ours.
MAKING THE BRAVE CHOICE TO SHARE OUR STORY
We shared our journey with our immediate family, who helped us by supporting us and caring for our son throughout all of our doctor appointments. We are coming up on the one-year anniversary, and there still are people in our lives who don’t know anything more than we lost a baby, mostly because I’m scared of being judged for the choice we made.
I have shared most of our story on social media, focusing on the deep sadness and grief we experienced throughout the process of losing Maeva, delivering Memphis, and being a mom to Maverick all at the same time. For me, I had to lean into my grief, and that meant being sad, even when I was expected to be joyful about expecting a healthy baby. Honoring those complex feelings has allowed me to really move through my grief to be in a place today where I can talk about my loss and share how we might be able to make changes for other families in the future.
After a lot of self-reflection and professional help, the feeling of being judged-while still present and a great fear of mine-has diminished to where I now know that my choice was made purely out of love and that cannot be challenged in anyway. If it takes being judged a few times to help even one family, well then, so be it. Love is always greater.
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. To know that the differences in terminology and experiences before and after 20 weeks of pregnancy wasn’t explained to me feels like an injustice to my family. To know that I wasn’t given more detailed information about continuing the pregnancy and what Maeva’s life would have looked like feels like a tragedy.
The injustice and tragedy motivate me to fight for other families who might not have the support system I did or the ability to ultimately find peace with an impossible decision. Even if I wish it looked different, I honored my daughter the best way I knew how, and now, I want to help other families who are experiencing this pain also by ensuring they have all the information possible.
FEELING THE LOSS OF MAEVA AS I CARRIED MEMPHIS
Carrying both girls after the termination taught me a lot about myself and my spirituality. 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 as close. It was an incredibly painful feeling. 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.
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.
I was able to carry both of my girls until 31 weeks when my water broke. I was hospitalized in an effort to stop my labor, and I stayed there until I went into active labor at 33 weeks. I delivered my girls by emergency C-section, and I did not get a chance to see Maeva. Although it would have been difficult, it would have been my only time with my baby.
It wasn’t until recently, when I began to speak with my hospital’s bereavement committee, that I realized I had the option to see Maeva. Based on the information I was given about what her physical condition would be like, I believed it wasn’t an option for me to see her. 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. I think getting to hold her would have helped this feel more real.
I have to remind myself, though, that I did the best I could with the information I had. I labored the first nine hours alone, and I ended up with a serious infection that ultimately led to an emergency C-section. In those moments, I was focused on getting Memphis here safely, and I did the very best I could as a mother in an impossible situation.
LOOKING BACK AND FINDING PEACE
In all of this, I truly don’t have any regrets. I made a choice based on the information I was provided by my health care team that I trusted. A choice that was made out of love. I cannot change what was done, and I feel at peace most days. But in saying all this, I feel it should be the duty of health care providers to inform families on all options regarding babies who face life-limiting diagnoses.
I was made to feel like termination was the only and best option, and although at that point in time it was the best option for us, I truly wish more counseling had been made available. I wish that we knew about other families who had been in these types of situations and decided to carry to term.
I can’t say for certain my decision would have changed if I was made aware of how important it is for moms and families to be able to have seconds, minutes, days, or weeks with their babies, or if I knew what exactly it would be like to prepare for a death so quickly after birth, or even if I would have waited the two days to have my baby seen as a stillborn.
What I do know is that being informed would have made a world of difference. What I needed was information about the terminology used for the stages of pregnancy. I needed to know what I could have expected in either situation-termination and pregnancy continuation. I needed to be empowered to make a guilt-free decision. I needed access to and support from an organization like Carrying To Term.
If I had had all of that information and support, and my outcome had still been the same, I would have had a lot more confidence and peace in my heart, knowing that I made the right choice for me at the time. The freedom and peace that could have come with trusting that I had not missed important information would have changed so much for me. It would have helped me feel free to share my story sooner.
For any mother and family that is in a similar situation, I think it is important, first and foremost, to listen to your heart. Secondly, 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. Ask all the questions and weigh both sides, even if you feel as though you have already decided. You will never regret being informed.
I felt as though there were not resources available to me, but the fact is that there were. I just didn’t know about them. Until we all begin to speak about this experience, how will others find the resources they need?
WHERE WE ARE 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. 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.