Born Without a Uterus: Brianna’s Diagnosis of MRKH Syndrome and Her Infertility Journey
When Brianna was a little girl, she vividly remembers playing house and dreaming of the day she would be a mom and have kids of her own. However, when she was 16 years old, she still hadn’t started her period, and her mom took her to the family doctor, and they weren’t sure what was keeping her from starting my period. She was passed around to a few different physicians and eventually ended up at SickKids in Toronto where she underwent various tests and diagnostic imaging. It was then they discovered that she did not have a uterus and was diagnosed with Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome. MRKH Syndrome is a rare congenital disorder where the vagina and uterus are underdeveloped. She remembers being shocked to learn she was without a uterus but at the same time, she also remembers instantly going into denial. She was only 16 years old at the time, and she knew one day she wanted to have a family but at that point in her life, she was in high school and thinking about what she wanted to do for her career not how she was going to build her family. So, she put her diagnosis on the backburner for a long time until she knew she wanted to start the long journey of going through IVF, finding a surrogate, and creating her family in a way she never dreamed for herself.
“When I first learned I had MRKH Syndrome, I was 16 years old and internalized what the diagnosis meant for me long-term…I was too embarrassed to say that I didn’t have a uterus and I didn’t want to be viewed as abnormal.”
GROWING UP WITH MRKH SYNDROME
“When I first learned I had MRKH Syndrome, I was 16 years old and internalized what the diagnosis meant for me long-term. We had Facebook at the time, but social media was nowhere near what it is today. I wasn’t aware of any support groups or communities that I could turn to for help or advice. Part of me felt isolated and alone but I kept pushing those feelings further down.
No one outside of my immediate family knew about my diagnosis, except for my boyfriend, who is now my husband. We’ve been married for five years and together for 15 years and I remember after my diagnosis that I felt like I needed to share this with Josh. I was absolutely crazy about him and knew that if we wanted kids together someday, it was going to be a challenge and would take an untraditional path to start our family. I needed to let him know what he might be in for and give him a way out. From the day I told him, he’s been nothing but supportive and stood by my side this entire journey.
Outside of Josh, I didn’t tell a single friend about having MRKH Syndrome. A girlfriend would ask me if I had an extra pad or tampon in my bag and I remember looking through my bag pretending to try to find one. I was too embarrassed to say that I didn’t have a uterus and I didn’t want to be viewed as abnormal. I was afraid to tell people.”
WHEN ARE YOU GOING TO HAVE KIDS?
“Josh and I got married in 2018 and I found it impossible to avoid the questions of when we were going to have a baby. It’s such an innocent question and I try not to take offense to it. People are genuinely excited for you but at the same time, I hate the question. I also found people would ask at work or in a busy restaurant setting where it didn’t feel like the appropriate space to divulge all my personal information.
While it was getting harder to smile and skirt the question with the simple answer of ‘someday’, I also didn’t want to make others feel bad or feel uncomfortable with my response that would include the detail that I don’t have a uterus. Instead, it was easier to be the uncomfortable one in those conversations.”
READY TO START OUR FAMILY… THE ALTERNATIVE WAY
“In 2020, Josh and I decided we were ready to explore our options to start a family. One of the silver linings we have always seen with my MRKH Syndrome diagnosis is that ever since I was 16 years old, we knew our path to parenthood would be different and we could start planning earlier than we typically might have. We were able to give ourselves more time because we knew it could be a long process.
We had our first meeting with the fertility clinic in January 2020 and then COVID hit, and things immediately felt chaotic, especially because I was a nurse working in the hospital. We decided to put our journey on hold and the following January 2021 we were tired of putting our life on hold and went back to the fertility clinic to get everything organized and start our family.
In addition to not having a uterus, I had also learned I had a low AMH level that indicated I likely had diminished ovarian reserve. That made me nervous and determined to give IVF a try to see how many eggs I could get myself. While my doctor reminded me it only took one egg, the expense of it all made us want to make sure the process was worthwhile mentally, physically, and financially.”
“Finding a surrogate is a process and it’s not just about finding a suitable uterus for your embryo. It’s so much more than that. You need to make sure you connect with the woman and her family and make sure you have similar values”
FINDING HOPE BY SHARING OUR INFERTILITY JOURNEY
“When we decided to start IVF, I started my Instagram account to share my MRKH diagnosis and share what our path to parenthood was going to look like because it was different. I thought at the time it would provide an easier way to share my diagnosis and our infertility journey with the people in my life. I wouldn’t have to constantly share individually with people face to face and instead friends, family, and colleagues could read our story collectively online.
I also used the platform to educate about MRKH Syndrome and we had a family friend come forward a few months after I started sharing on social media who said she would love to be our surrogate! With surrogacy agencies in Canada being expensive, it can be hard to find a surrogate and we knew we were incredibly fortunate to have someone come forward after hearing our story. Finding a surrogate is a process and it’s not just about finding a suitable uterus for your embryo. It’s so much more than that. You need to make sure you connect with the woman and her family and make sure you have similar values.”
THE START OF OUR SURROGACY JOURNEY
“We jumped on the opportunity for our family friend to be our surrogate and I completed my first round of IVF in the summer of 2021. We were able to create five healthy embryos that all tested normal after genetic testing. I remember our doctor sharing the news and asking if we wanted five kids because that was how many healthy embryos we had. We were ecstatic and when I look back on that moment, I feel so naïve thinking five embryos equated to five babies.
We did two transfers with our first surrogate, and both were unsuccessful. We started discussing the possibility of doing a third transfer but before we did, our doctor wanted to run some additional testing. Our first surrogate had some things come up in her personal life and made the decision that she could not move forward with a third transfer. We completely understood and respected her decision and at the same time it was a punch to our gut, feeling like we were back at the beginning of the process. At that point in our journey, we were devastated.
Surrogacy is huge ask and in Canada it’s an altruistic deed that someone is agreeing to. Surrogates aren’t paid outside of being reimbursed for their pregnancy related expenses and that makes it feel like an even bigger ask of someone. Those that agree to be your surrogate are doing so purely out of the goodness of their heart and wanting to help someone else. You are asking a lot of a surrogate physically, emotionally, and mentally and it can be hard. I like to do things for myself and it’s hard to rely on others, especially for something we want so badly. But in this case, as we are trying to have a baby, we are at the mercy of others.”
“She was an absolute trooper and did anything possible to help us reach our goal of a baby, simply out of the goodness of her heart.”
HAVING TO FIND A SECOND SURROGATE
“After our first surrogate stepped away, Josh and I took time to enjoy other aspects of our life because we realized we had been consumed by our infertility journey. It was becoming a heavy burden on us mentally. During our break, I continued to be vocal on social media, educating about MRKH Syndrome and connecting with others going through surrogacy. One friend told me that it was good to take the time we needed to take care of ourselves but also remember that we will never feel as good as we will once we reach our goal of holding our baby in our arms. Her words hit home for me and were the reminder I needed to rest and process and then use that to keep working toward our goal. At that moment, I was sad, and the journey had already been hard for us but if we didn’t keep trying, we weren’t going to get anywhere closer to holding our baby.
From that conversation, Josh and I made a spreadsheet of the surrogacy agencies across Canada and had a few consultations with a few to explore our options. At the same time, we were also encouraged to utilize social media because we had friends who were connecting independently on social media with potential surrogates. We decided to make a reel explaining MRKH Syndrome, share where we were located, and that we were looking for a surrogate. We ended up getting over 100,000 views and I went from having a couple hundred of followers to having over 1,000 followers. Huge social media accounts were sharing our story and the support we felt from strangers and people who genuinely wanted to do what they could to help us was incredible.
I also reached out to a social media news outlet for our city to see if they would share our story, which they did, and they asked to also write an article about our journey. Jen, our current surrogate, was scrolling Facebook when she found this article about us and reached out interested in helping us and being our surrogate!”
THREE BACK-TO-BACK ROUNDS OF IVF
“We did two embryo transfers with Jen and both failed. We decided to do a biopsy and some additional testing, and they found Jen had endometritis. After a round of antibiotics and another biopsy, the results came back within normal limits, and we proceeded with our third and final embryo and it also failed. It hit us hard not only because it was our final embryo but because we had agreed in Jen’s surrogate contract to three embryo transfers. We were out of embryos and potentially back at square one in finding another surrogate.
I ended up doing three back-to-back rounds of IVF because of my lower ovarian reserve and because our doctor offers three rounds of IVF for the price of two rounds. At the same time, Josh and I sat down with Jen and her husband, and they were determined to do this for us. Jen understood if we wanted to find someone else, but if we wanted, she was more than happy to try again. She was an absolute trooper and did anything possible to help us reach our goal of a baby, simply out of the goodness of her heart. After six transfers total with Jen, we got our first positive pregnancy test and can’t wait to welcome our little one in August 2024!”
“No matter how hard or how impossible your journey feels, every embryo, every protocol, and every cycle is a new chance.”
BEING PREGNANT AFTER LOSS
“Prior to getting pregnant, I would tell myself that if I could just see those two pink lines, I could stop holding my breath. But then we saw the two pink lines, I was still holding my breath and decided I really needed to just see a strong beta number. We had strong betas, that kept growing as they should, and that still didn’t bring relief. It’s now become the need for the ultrasound and making sure the baby is viable.
As we keep moving along with this pregnancy, I can’t quite let go of my breath and I’m holding on until I can reach the next step. Honestly, I can see it going like this until we have our baby in our arms.”
FINDING PURPOSE IN OUR STRUGGLE
“I had someone comment on one of my recent posts saying she was seriously considering becoming a surrogate because of our story. After reading about our journey, she now has the desire to help another family in need and it made me tear up reading her words. If that is the difference I can make by sharing our struggle, and if another family can have this amazing woman as their surrogate someday, that would make me so happy.
I have spent a lot of years having the ‘why me’ mentality and one of the reasons I decided to start my social media account and share so publicly was because I wanted others to not feel so alone through their own struggles. I wanted to find some purpose for having to go through this and try to make it positive in some way.”
WHAT HELPED US KEEP MOVING FORWARD ON OUR JOURNEY
“We have tried to stay focused on what our end goal has always been, to hold our baby in our arms, and that has helped keep us moving forward. There are some days that I think to myself how it would be so easy to throw in the towel and stop spending thousands of dollars on a chance, not even a guarantee. It would be so much easier on myself mentally and emotionally if we just stopped putting ourselves through this process.
But then I remind myself of our end goal and how we want to try everything we can and explore every option possible to have children. I think about the three rounds of IVF we went through to make more embryos, the physical, emotional, and financial burden that took. If we stopped now, I would feel like it was all for nothing. The community on social media has also given me hope when I see others find success after failed transfers and I can hold on to the idea that we, too could finally be pregnant. It’s those reminders that has helped up stand back up and get back out there even during the most challenging times of our infertility journey.”
“Nothing about this journey is easy and it’s all for a hope and not a guarantee.”
THE EMOTIONAL WEIGHT OF MRKH SYNDROME AND INFERTILITY
“In my younger years, it was easy to push aside any emotions I felt about not having a uterus and what that meant for how I would create my future family. However, once Josh and I got engaged and then married, and as I got closer to 30 years old, the weight of it all started to feel very heavy.
It was also during this time that I was still afraid to share with people that I had MRKH Syndrome because I felt embarrassed and ashamed. I was hiding a significant part of my life and carrying that around added to the emotional stress. When I did make the decision to start sharing our story, I felt the weight leave my shoulders and I felt like I could breathe a tiny bit easier. I could finally be open about it and could be myself.
I found it easier to tell my friends via text as opposed to a face-to-face conversation. I was afraid of getting emotional and not being able to think on my feet or say the right thing. I knew they would be supportive, but I wasn’t sure if any comments would throw me off and cause me to get upset in the moment. Since sharing, everyone has been nothing but supportive and there is a part of me that wishes I had not been so afraid to share earlier because it would have saved me a lot of internal struggles.”
ONE EMBRYO DOES NOT EQUAL ONE BABY IN YOUR ARMS
“I thought the hardest part of our infertility journey was going to be finding a surrogate. Once we found her, I thought it would be smooth sailing to pregnancy and holding our little one. I was mistaken…
I have learned through this process that one embryo does not equal one baby in your arms. Just because a surrogate had a previous pregnancy that was healthy and natural, and just because you have a perfect genetically tested embryo, a perfect uterine lining, and perfect hormone levels, the transfer can still fail. This has been eye opening for me because it made me realize that none of what we do on our infertility journey equals a baby or guarantees a baby at the end of it. Nothing about this journey is easy and it’s all for a hope and not a guarantee.”
“I wanted others to not feel so alone through their own struggles. I wanted to find some purpose for having to go through this and try to make it positive in some way.”
FOR THOSE STILL WALKING THEIR PATH OF INFERTILITY
“When I was first diagnosed with MRKH Syndrome and even in the beginning of our journey to parenthood, I felt so isolated and so alone. I want to encourage others to reach out for support if you need it. There are so many online resources now for people with various infertility conditions and don’t be afraid to seek about the support you need. There is something special about being able to connect with people who are in the same situation as you and you don’t need to share publicly to make those connections. Most important, you don’t need or have to go through this journey alone.
I never want to give the idea of false hope, but I also want to share that we went through seven embryo transfers before finally having success with our eighth. No matter how hard or how impossible your journey feels, every embryo, every protocol, and every cycle is a new chance. I always held on to that idea with each transfer. I did have days where I would think how if it didn’t work in the past why would this round be any different. But then I’d have to remind myself that each embryo is different. Each embryo is a new chance. Sometimes it pays off to not give up on your dream.
Most importantly though, I recognize that there are instances where no matter how hard you try, it simply doesn’t work. For those that are in that space, I encourage you to listen to your needs and to take care of yourself mentally, physically, and emotionally. Do what is best for YOU!
You can continue to follow Brianna’s journey to parenthood as they anticipate the arrival of their little girl via surrogate in August 2024 and can also see how she continues to uplift and support others battling infertility on Instagram @growingthegills.