How One Diagnosis Changed Everything
Navigating vEDS, Pregnancy, and a Journey of Healing
Trigger Warning: This post discusses pregnancy, labor/delivery, and heart health.
At the beginning of this year, I had the honor of being interviewed by OSU for Heart Health Month. You can read the full article and watch the video here. Reflecting on and sharing about my two pregnancies and c-sections brought more healing than I could have ever imagined. Each journey was unique and my body handled each pregnancy differently (like most/all pregnant people). The pictures above are just a glimpse into how different I looked for each pregnancy. To understand the full scope of why pregnancy, labor/delivery, and heart health are connected in my journey, we need to go back to my sophomore year of high school.
My Diagnosis: Life Changes in an Instant
I was diagnosed with Vascular Ehlers-Danlos Syndrome (vEDS) at just 15 years old, and in an instant, everything changed. I was told I couldn’t play sports anymore, and from that moment, my life shifted entirely. All the risks were presented to me at once—aneurysms, internal bleeding, and even being cautioned against having children. It was overwhelming, but I was fortunate to have an incredible support system. My parents, family, friends, and teachers stood by me every step of the way.
My mom, who shares this diagnosis, understood exactly how I felt. I’ll never forget the two of us sitting at the computer, looking up vEDS. Big red letters spelled out every scary possibility, and yet, she stayed with me as we explored forums and read testimonials from others who had been through it. She shared her story with me too, offering the kind of support that made those moments far less isolating. Her experiences and resilience paved the way for me to advocate for myself and seek the best possible care. Just recently, I learned that a local paper came to our house to interview her about her diagnosis and journey with vEDS. Like mother, like daughter! It’s incredibly meaningful to carry the torch as the next generation, sharing not just my story but our story.
Doctors were still learning about vEDS back then, and much of their advice revolved around avoiding high-impact activities. To be honest, even today I find myself explaining vEDS to medical professionals and explaining that, “yes, I was diagnosed with it at an early age, and yes, I did receive a second opinion years later.” I used to think this was frustrating and then I realized how important it is for me to keep the lines of communication open with my team of medical professionals. It feels like we are part of the same team, not me versus them, but me working alongside them to ensure I receive the best care possible.
20+ Years After Diagnosis
Today, I’m intentional about my health and well-being, with a dedicated team of medical and mental health professionals. My life coach of over 13 years has been invaluable, and genetic counseling was an essential part of my first pregnancy. My support system continues to grow as more people learn about vEDS and how it has impacted my life.
For over 12 years now, my husband has been by my side for every scan, difficult conversation, challenging decision, and pregnancy. Regular checkups and full-body MRIs every two years help me monitor my vascular system, and I’m never alone during each checkup and the follow-up conversations.
Pregnancy and Advocacy
There are a lot of risks that come with being pregnant and having vEDS — my pregnancies were high-risk before my doctors even met me. I had a lot of medical professionals on my team: OBGYN, high-risk doctor, vascular surgeon, cardiologist, genetic counselor, and my life coach. Each pregnancy was a unique experience. My body responded differently each time but I was fortunate to not have any major complications.
The common thread between both pregnancies was learning to trust myself more and lean on my support system. I had to be my biggest advocate. During my first pregnancy nothing went as planned. My vascular surgeon did not communicate well — the day of my planned c-section when my water broke and I went into labor — I was in an MRI machine for an hour because he conveniently forgot to mention that I had vEDS to the anesthesiologist. Was it necessary to get the MRI? Yes. Could it have been done sooner? Also, yes. In this moment, I learned A LOT. Mostly, I learned to trust my body, my gut-knowing, and ask as many questions as I needed. No question was too small.
So when it was time for all the scans with baby #2, I knew what to ask, and how to advocate for what I needed and when. It was great! It was not the same medical team as we had moved to a new city. The difference here was we also had a toddler running around, haha. So the recovery was far more difficult, especially with having a second c-section. Again, I leaned into my support system and continue to do so as a mom of a 5 year old and a 2.5 year old.
Postpartum and Healing
Post-partum has also been a wild ride. Navigating hormonal shifts, nursing, and parenting has required immense mindfulness. One thing that’s helped me is grounding myself in my body daily. I no longer want to stuff my emotions and let them become pain in my shoulders or hips. It’s a mindful practice and one I help other women with through my coaching and Protect Your Peace program.
Healing has meant shining a light on my deep-seated limiting beliefs. I carried guilt for not doing a better job at advocating for myself when pregnant with baby #1. That guilt goes back to my first pregnancy that quickly ended in a miscarriage. As well as frustration over the care I received. I knew I needed deeper healing and just a couple months ago attended a deeper healing intensive workshop with my coach. I needed a safe place with support to process these emotions and work towards a place of compassion and acceptance for myself. Which I am so grateful that I am on that part of my journey because it feels like my 15 year old self is also along for the ride. She needed a place to feel safe too and work through the grief (sadness, anger, afraid) when it came to receiving a life changing diagnosis.
Why I Share My Story
Sharing my journey has been cathartic—it’s healed me in ways I couldn’t have imagined. Through sharing my story with others, it has helped me with the grief and limiting beliefs I’ve been experiencing. It reminds me that I did the best I could with the knowledge I had at the time. Reflection, time, sharing, prayer, and meditation have been my greatest sources of healing.
I hope that by opening up, someone reading this feels a little less alone in their own challenges. It's always okay to ask for help or to voice the question that might seem small or insignificant but lingers in your mind—ask it. Advocate for yourself, because your voice matters.
You are never alone, and healing is a journey filled with small, meaningful steps — forward, backward, up, down, and everywhere in between. It’s not about perfection, it’s about progress, and it’s filled with opportunities for learning, growth, and healing.
OSU Interview: You can read the full OSU article, "Survey: Many Americans Don’t Know Long-Term Risks of Heart Disease with Pregnancy," and watch the video HERE.
Thank you for taking the time to read and watch my story. I hope it offers even a small dose of encouragement, and perhaps helps someone feel seen, understood, and empowered.
💜Laura
