Pregnancy with Lyme Disease

I’ve known for quite some time that because of my Lyme Disease I will be unable to get pregnant and carry my future children. It’s always been sad, but it’s also just been a fact that I’ve had to accept. However, as I get older and the reality of having children gets closer and closer, the sadness has been bubbling up more and more, and at times it becomes overwhelming. Sometimes it’s hard to voice my hurt, frustration, and anger because I feel like people take it as me sitting in negativity. I want to be positive about my situation and be someone that tries to accept my life, but no one can be happy all the time and I think it’s okay to want to scream and cry sometimes when thinking about all that I’ve lost.

I know there are millions of women that go through fertility issues and my heart breaks for them. However, it’s rare for me to come across someone that can truly relate to my situation. It’s not just the difficulties with pregnancy I’m dealing with, but I also fight daily to get back to a life I lost 13 years ago, and this is just another line item in a list of things I’ve had to give up.

As a child, some of my first memories are of me playing with baby dolls — it was my favorite thing to do! When anyone would ask what I wanted to do when I got older, being a mom was absolutely at the top of my list. Having kids was always something I dreamed of and assumed would happen easily. As a kid, you don’t think of the real-world difficulties that can come with having children — you’re blissfully naïve to what the real world has in store for you. As I grew up, I developed more dreams of what I wanted in life, but being a mom was always still high on the list. What most don’t realize is that not only was my dream to become a mom, but being pregnant was an equal part of that dream. It’s something I thought a lot about: feeling your baby growing inside of you, watching your body change, and getting to realize first-hand how amazing a woman’s body is to be able to bring a child into the world. I’m not saying I was excited for the labor part, but despite that, it’s something I always assumed I’d get to experience. I envisioned going through all of the ups and downs of pregnancy: the pregnancy test, telling my husband, feeling the baby kick, taking maternity photos, talking to my baby late at night when it was just the two of us awake, growing closer to my husband as we experienced it all together, and then once the baby came, being completely delirious because I was up all day and all night breastfeeding the little one. Most of all, knowing when the baby came into the world that I already had this unbreakable bond because I carried this child for 9 months, and during that time they only heard only my heartbeat and my voice, leading to an unexplainable, undeniable, and truly real bond between mother and child.

When I was first diagnosed with Lyme Disease I had no idea what I was up against. I knew nothing about this disease and was so naïve to what it meant for my future. I still remember the first time it was even mentioned that this might affect my ability to get pregnant. It had been 3 years prior that I was diagnosed and I was still completely unaware of how much this illness would consume my life. I knew I was sick and I knew I wasn’t making much progress, but 3 years in I was still hopeful that a cure was just around the corner. The movie Under Our Skin had come out and my parents had watched it before I did. The movie spoke about the danger of mothers passing Lyme on to their baby, and also talked about the huge risk of miscarriage and birth defects because of the disease. At that point I simply couldn’t wrap my head around it — I knew it was something I needed to consider, but I wasn’t married and wasn’t looking to have a kid right then. Since it seemed so far off, I still had hope.

Over the years that hope faded as I learned more about the risks and lived more of this life with chronic illness, it became clear this would be a huge decision I’d have to make. On one hand, I could carry the child without taking any meds and have a very high risk of miscarrying or passing Lyme onto my child. If the Lyme is passed, they could potentially have no issues until later in life when it could be triggered and at that point become chronic. If that happened they could be dealing with what I’ve had to for years and years. Or after birth they could immediately have issues like brain defects, joint issues, unrelenting pain, or a number of other symptoms that would be life-altering. The other option would be a pregnancy filled with taking antibiotics to lower the chance of miscarriage or passing the Lyme on, but the chance could still be as high as 25%. Even if I end up being lucky enough to not pass Lyme onto my child, I would have a very high chance of having a relapse of my Lyme symptoms postpartum. I’m writing this 13 years into treatment with still no real relief from my symptoms, so if I’m lucky enough to reach remission, how could I risk relapsing and not knowing how long it would take to get healthy again – all while trying to take care of a newborn?

To me it seems like a simple but heartbreaking decision. I don’t want to put my future children’s lives at risk simply because I always imagined I would have this experience. Even though I feel like that is the right decision, it doesn’t make it any less painful. I still cry about this decision way more than I’d like to admit. So many people go through harder things than this and so part of me always feels bad for being so upset. I know that when we have our first child and they are in my arms it won’t really matter. But I also wonder if I’ll always feel this ache in my heart.

This is a continuing conversation in our podcast, and if you’re interested in learning more you can start here.