I Am More Than the Lady with Epilepsy Who Can’t Carry A Baby: Baden’s Surrogacy Journey

It was the summer Baden was turning 14 and she will never forget sitting across from her pediatric neurologist, as they spoke directly to her mom about her epilepsy diagnosis rather than at her, the patient. They were saying, because of her epilepsy, Baden would likely be unable to finish high school with any ease, she would likely never go to university, get married, live alone, or have kids. All of that was now out of the question. Her mom was advised to prepare for Baden being a child she was going to need to care for her whole life. While at that time Baden was having a lot of seizures and was not well, she knew what they were saying, and the words were incredibly hurtful. Baden was left with more questions and self-doubt than answers or optimism.

“I wanted to be seen for who I am and the parent that I would be and not as the lady with epilepsy who couldn’t carry a baby.”

When you’re in your early teens, you have an abstract idea of how your future will look. You think about how one day you’ll have a job, you’ll be married, with a house, and have two kids and a dog. You don’t have all the details figured out but for, Baden, her neurologist clipped her wings before she even tried to fly and see how far they could take her. While her journey to parenthood has been far from easy, the help of surrogacy and the belief in what her future could be, led Baden to a life filled with a passion-driven career, a supportive partner, and a little one. Far from the picture first painted by her neurologist!

NAVIGATING EPILEPSY AND STARTING A FAMILY

“I am incredibly grateful that my family was immediately dedicated to finding and traveling to the right hospital or doctor that could help with my situation. I started medication for the seizures and after many failed medications, we found a medication that controlled my epilepsy. The only thing I still couldn’t do and still can’t do is drink and carry a healthy pregnancy.

Throughout high school, my seizures stabilized, and I returned to being an honor student and rebuilding the idea of how my life could look. When I thought about how I would start a family, I thought I would probably go the adoption route, but I hadn’t really explored what that would entail. My family was always supportive of what I wanted to accomplish in life, and they were going to help make it a reality.

I met my husband at 18 years old. We were lucky to find young love and on our first quasi date at Starbucks (quasi because it wasn’t meant to be a date originally), I was upfront about everything I wanted in life, including my restrictions of not being able to get pregnant. He wasn’t scared off! Credit to him, he liked me and was willing from the start to figure out what our future would look like together. When you have a chronic condition like mine, all you can ask for is to be accepted like a regular person and even from our quasi first date, that is exactly how my husband saw me.”

ONE FINAL TRY TO CARRY A PREGNANCY MYSELF

“Fast forward several years and my husband and I were about to get engaged. I learned that some women with epilepsy do successfully carry a pregnancy, but it comes down to the medication. My medication was a Class X drug, and I couldn’t take it and safely carry a pregnancy. But there were a couple of other medications to try and feeling optimistic, I went through the process of weaning off my current medication and switching to one that was the safest for pregnancy.

To say the switch was a disaster is an understatement. I immediately started having seizures and had to give up my driver’s license again. I was struggling at work, in my personal life and with friends, my mood worsened, and I felt like my body was no longer my own.

I think everyone knew I was struggling but I refused to acknowledge it because I wanted this new medication to work so badly. I thought if I gave it another month, maybe the medication would settle in. I thought if I just tried harder on the new medication, I could spare my family and my now husband any hardship. Whether you have epilepsy, fertility issues, or any different condition, particularly for women there is a concept of ‘if I just try harder, I will make it easier for everyone else.’ But that is an absolute myth! 

I eventually started having grand mal seizures and I was unable to cover those up. The worst one happened riding in the car with my mom and she drove me right to the hospital. The doctors said it was my choice but at some point, I had to decide when it was enough, and we had reached the point where I needed to put my health first. It was the end of my attempt trying to carry a pregnancy.”

“There is a concept of ‘if I just try harder, I will make it easier for everyone else.’ But that is an absolute myth! “

MAKING THE DECISION TO USE A SURROGATE

“There was a distinct conversation I had with my mom deciding to use a surrogate. I was in tears as I went up to her room, feeling like I was letting her down. She had the opportunity to carry me and that was a part of her motherhood journey I would never experience. When I shared I wanted to pursue surrogacy, she didn’t even hesitate with her support: ‘so you’ll do surrogacy.’ She assured me that whatever the obstacles were, it was an option for us, and we’d figure it out together.

My now husband and I started our surrogacy journey the way most people do: with a Google search. We knew our first step was to find a clinic and Google was not as helpful as we had hoped. While the clinics were excellent at providing medical support, they didn’t always have the resources or the time to guide us through the emotional or financial aspects of surrogacy. We quickly learned the resources available to us were behind a pay wall, which was incredibly frustrating.

The one thing we did have going for us was that we knew early that we were going to turn to surrogacy to build our family. It gave us time to research, ask questions, and start saving money. We were able to share with our family and friends to normalize it and create a level of openness and transparency. We had a slower approach to our surrogacy journey and could approach it in a way that felt comfortable.”

ISOLATION ON OUR SURROGACY JOURNEY

“While we were able to enter our surrogacy journey without the urgency others who suffer from unexpected infertility sometimes carry, it can be isolating if you’re unable to find people who relate to your story. There are pockets of the surrogacy community who look at those of us having to use a surrogate because of a chronic illness and claim that we’ve had it easy.

It’s incredibly tough to hear those words because we are on the same journey and often, ours started much earlier. I joke that my surrogacy journey has been 16 years, when surrogacy was first introduced to me as a viable pathway to parenthood. Despite having to live with this for 16 years, it’s still challenging each time a stranger looks at my petite stature and says, ‘you’re going to look so cute pregnant.’

The sting of infertility being something new to deal with is gone but it will always remain a dull pain.” 

FINDING SUPPORT FROM THOSE WHO DID SURROGACY BEFORE US

“We were lucky and introduced to another local couple who had just gone through their first surrogacy journey and successfully had their daughter. We set up a phone call and they were quick to insist that we come over for dinner. They gave us an overview of the costs and clinic aspects, warned us of red, yellow, and green flags when matching with a surrogate, and they outlined what our timeline would likely look like.

We knew that every journey looked different, but we benefited incredibly from the help they provided, which is in turn, a huge part of why I now share the resources I do with people because we all need and deserve the support.”

“Getting my period was a physical reminder that even though I was pregnant, it wasn’t my body doing the work.”

WHEN OUR SURROGACY STORY WENT VIRAL

“I’m a storyteller and I didn’t trust anyone to tell our story the way I trusted ourselves to share our story. There is no one else that could be as strong of an advocate for the two of us as ourselves. We decided we wanted to share our story publicly, not knowing how long it would take to match if we weren’t vocal and sharing broadly.  

We started a blog and an Instagram page. The blog was initially called Not My Tummy, But I’m Still Mummy, and the Instagram is what I still use today (@notmytummy). We started to share bits of our personality, what we were looking for in a match, and surrogacy education pieces for friends and family. Bit by bit, people started to pay attention to our fertility story. We started to develop friendships with other intended parents, and that was encouraging.

Then one day, with a single video, everything changed. I filmed my husband and my dog, included some text on the video about what we were looking for in a surrogate, added a trending audio, and it blew up! We had almost 700,000 views and dozens of people sending DMs saying things like, ‘I’d love to be your surrogate’ or ‘I’d love to carry for you. Can you tell me what’s involved?’ We were shocked!

While most were not the right candidates for us due to medical qualifications or geographic restrictions, we did find our initial match from our viral post. We matched with a lovely woman we worked with for a few months, who had to unfortunately walk away due to a family emergency. Like with anything, the unexpected can happen and you have to roll with the punches as they come.”

FINDING OUR PERFECT SURROGACY MATCH

“We took about a week after our match fell through to cry and regroup and then we posted another video. This video went viral as well! Within 24 hours, Ashley reached out to us and ultimately became our surrogate who carried our daughter. She sent a sweet message saying she saw our video and wasn’t sure if she qualified but would love to have a conversation. The connection was instant.

It's cliché to say that everything happens for a reason but our experience with Ashley was proof. When our first match broke off, I asked ‘Why me? Why is this happening?’ But now I know why: because we were meant to meet Ashley and her family.

We connected instantly and far more than two people wanting to share a surrogacy journey. Our first conversation was a little bit surrogacy and more tangents on general interests and joys of life, like our husbands’ mutual love of barbequing. It took the pressure off because we immediately felt at ease with each other, allowing our conversations to go beyond surrogacy and pregnancy. When you can just be friends with each other, that is what makes for the perfect match.”

“There is no protocol for losing a baby that is not yours, nor is there a protocol for losing your baby who is not in your body.”

SURROGACY JOURNEYS HAVE NO PROTOCOL

“Our first transfer resulted in an early loss. Ashley and I were both trying to support each other, yet neither of us knew how or what to do for the other. There is no protocol for losing a baby that is not yours, nor is there a protocol for losing your baby who is not in your body. We found whatever harmony we could through the grieving process and then we took one cycle off before going through another transfer.

I was guarded going into our second transfer, but it worked and resulted in our daughter! It took time to trust she would stick, and we went through the early days with cautious excitement. Eventually, the excitement of being a first-time parent won over, and I allowed myself to breathe into the optimism and excitement of being pregnant.

Ashley was great at sharing the pregnancy milestones in a way that was sensitive to me not experiencing them but gave me enough information to know that things were going well. It can be a difficult dance for surrogates and for intended parents to work through and every journey is a little different.”

HAVING YOUR PERIOD WHEN YOUR SURROGATE IS EXPECTING

“Jealousy was never a factor for me during my surrogacy journey but when I got my first period during Ashley’s pregnancy, that was a hard moment. I don’t hear others talk about this often and when I do share, it resonates with many. It’s a strange situation because it feels like a mind twist. You’re on your period but actively expecting a child and those are two things that typically do not fit together.

Getting my period was a physical reminder that even though I was pregnant, it wasn’t my body doing the work.”

LEANING ON MY HUSBAND

“I found a way to keep moving forward on our journey by leaning on my husband during the difficult times. Especially during the harder parts of our journey, we’d connect while taking our dog for multiple walks a day, making a point to be fully present, phones away, holding hands. It was in the physical connection and the talking that we found solace. My husband was my therapy.

I shouldn’t have to say that I’m lucky, but I am lucky my husband treated our journey as just that: OUR journey. I have talked to too many women whose partners take a back seat and I cannot imagine that weight or feeling like I was alone in this. For me, my husband has been in it with me 100%!”

“Find your village. We are here…ready for you and want to support you. You can’t and shouldn’t walk this journey alone.”

FIGHTING TO CHANGE PARENTAL LEAVE LAW IN CANADA

“During our journey, my husband and I decided we wanted to help change Canada’s parental leave law to become more inclusive of parents by surrogacy.

We started by nudging every friend we had who was a political staffer, reaching out to every politician we had knocked doors for, and talking to friends who worked in newsrooms about how this issue needed to be covered. There was an inequity where parents by surrogacy, adoption and kinship placement didn’t get the same parental leave benefits as parents who birth their own child. We worked to rally the community and it’s been announced that the parental leave law will be expanded and parents by surrogacy will have access to the same parental leave benefit as any other parent in Canada.

Two years ago, a more inclusive parental leave policy was a pipe dream. We could have said we were going through tough stuff and decided to focus solely on our own journey. To be clear, if that’s what you need to get through this journey, there is nothing wrong with that. But for us, we saw community service as a means of helping ourselves feel better in the process.”

FINDING A SUPPORTIVE COMMUNITY

“If I could offer one specific piece of advice, I would remind everyone there is a robust community of people going through surrogacy who are intended parents just like you and they are willing to help, point you in the right direction, offer free resources, or feedback. There is such value in tapping into those who have done this before you.

It is important to get the full picture before you get started on your own journey and there is a community of people who want to help.”

“My husband treated our journey as just that: OUR journey. For me, my husband has been in it with me 100%!”

PAYING IT FORWARD

“I started a business to help people tell their surrogacy story. It can be hard to write a bio about yourself and it can be hard to unpack your fertility story, which might be traumatic for you. I offer support and guidance by helping people find their own voice and then use it. Each person has an incredible story to share, and I work to help people talk about themselves in a way that will connect with someone who could potentially be their best surrogate match.

I’m not a guide or an agency, nor do I make introductions. I help people position themselves to have a profile that stands out. Most surrogates are coming to read the intended profiles with excitement and optimism. Being a surrogate is seen as an adventure and in most cases, they have never experienced infertility on a personal level. They are looking for people they connect with and who they envision as parents. Leading your intended parent profile with medical statistics is not always the best way to connect with someone. After we matched with our surrogate, she shared that it was a picture of me and my husband at a Blue Jays game in our jerseys and her shared love for the team that piqued her interest. She could picture going to a game together. 

When searching for my surrogate, I wanted to be seen for who I am and the parent that I would be and not as the lady with epilepsy who couldn’t carry a baby. I’m so much more than that. Having epilepsy is so far down the list of things that I think is relevant to my life and epilepsy is just something that I have. I think it’s far more interesting that I like to swim with sharks or that I’ve gone to the Galapagos Islands.

We are more than our medical information.”

FOR THOSE WALKING THEIR PATH OF INFERTILITY

“My words of encouragement are to find your village.

We are here. We are ready for you and want to support you.

You can’t and shouldn’t walk this journey alone.”

Baden continues to be an advocate for others, especially those walking the path of surrogacy through her business, Not My Tummy, where she helps intended parents find their voice and share their unique story in only the way they can. You can continue to follow Baden on her second surrogacy journey and her journey as a mama @notmytummy