Lauren's story: Adult CHD patient's journey of hope and advocacy

May 8, 2018
Adult CHD Program | Texas Children's Hospital
Images courtesy of Lauren Bednarz

Sometimes, when I’m looking at myself in the mirror, I glance down at my chest to admire the eight beautiful, faded scars on it. They have been a part of me since I was 6 months old, but I usually forget they’re even there. When I do stop to look at them, though, I’m reminded just how grateful I am to be alive. Each day I’m granted is truly a blessing!

I might seem like an average 30-year-old woman, as I live a pretty ordinary life. I’m a wife, a daughter, a sister, an aunt, a friend, a homemaker and an introvert, but I’m also a congenital heart defect (CHD) patient. I know my life with a CHD might not appear normal to those on the outside looking in, but to me it’s like the scars on my chest – normal. When I was 19, after realizing that my life with a CHD was unique and I could offer hope to others, I started sharing my life story, experiences and knowledge to the CHD community. This knowledge I’ve gained over the years is how I came to be a patient at Texas Children’s Adult Congenital Heart Disease Program in the spring of 2013.

I was born in Southeast Michigan in August 1987 as a seemingly healthy baby girl, but began displaying concerning symptoms after a few weeks. I was turning a gray/blue tint when fussy, and started sleeping and vomiting a lot. My mother was taking me to my then pediatrician once a week, because I kept getting worse. Finally, when I was 10 weeks old, my parents’ worst nightmare came true when tests revealed I was in severe heart failure. I was transferred to a children’s hospital, where I was diagnosed with severe congenital heart defects called tricuspid atresia, hypoplastic right ventricle, and ventricular septal defect. Simply put, I was missing my right ventricle, and I was dying from severe heart failure. To make a long story short, my parents were given two options: let their daughter peacefully pass away, or put me under a series of relatively new open heart surgeries for single ventricles. My parents had no idea what my quality or my length of life would be, but it’s obvious which path they decided to take.

I received an emergency balloon valvuloplasty upon diagnosis and months later I had my first open heart surgery, a pulmonary artery banding, at 6 months old. I had my second open heart surgery, the Fontan, at 27 months old. According to my parents, the first few years of my life were really rough, as they almost lost me multiple times. Following recovery from the Fontan procedure and up until I was 18, I lived a relatively “normal” life with few restrictions. My heart was doing well. I always knew I had a heart condition that would never go away, and I had yearly cardiology appointments and took daily medication. I honestly had no idea just how serious my heart condition was growing up, though. I’m so thankful to my parents who worked incredibly hard to give me a happy childhood.

By 19 years old, I had learned all about the seriousness of my heart condition and had run into my first post-Fontan complication, supraventricular tachycardia (SVT), which was all a bit scary and overwhelming for me at the time. Fortunately, medication (a beta blocker) was able to control this, and it still helps me today. I also learned just how sick I was as a very young child, and that I was part of the first generation of Fontan patients to survive to adulthood. With this information, alongside encouragement from my parents and pediatric cardiologist, I began attending local CHD events to give hope to CHD parents and their families and a year later felt the need to start a CarePage blog. This led me to create other blogs and social media channels over the years. Giving hope to CHD families has given me great joy.

When I was 22, my pediatric cardiologist told me I needed to start seeing an adult CHD cardiologist. I was sad to hear this, as he had been my cardiologist since diagnosing me as a baby, but I knew he was right. My parents were always looking to gain knowledge about my condition and be as proactive as possible, so I followed their lead as my own advocate. I began to research adult CHD cardiologists in my area, and learned more about the Fontan by reading medical research articles, listening to heart-related podcasts and so much more. I started going to a different children’s hospital in Michigan with a well-established adult CHD clinic. During the two years under their care, I traveled to Northern California with my then boyfriend- now husband, Chris, for an internship he had. We soon decided we’d be willing to move just about anywhere to find me a program providing superior Fontan care with great experience in performing Fontan revisions (a “tune-up” open heart procedure many Fontan-ers receive if qualified, which was my next best option if needed) – even if it meant we were no longer living near family.

Shortly following my annual cardiology check-up in June 2011, the adult CHD cardiologist I had been seeing in Michigan called to request a liver MRI, as he had recently learned Fontan patients could develop liver congestion, fibrosis, or cirrhosis. I was freaked out, especially when he couldn’t interpret my MRI results. My husband and I “hit the books” again to gain even more knowledge on the Fontan. We traveled to be seen by many wonderful cardiologists, and one of those cardiologists pointed us to Texas Children’s Adult CHD Program. So, in spring of 2013, my husband and I travelled from Northern California to Houston, Texas, for a week’s worth of Fontan testing, including a heart catherization by the talented Dr. Franklin. This was my first heart catheter in 23 years. We ended the week by meeting with a top cardiovascular surgeon to see if I needed the Fontan revision. This surgeon thought I was doing very well, and said the ball was in my court when it came to timing for the Fontan revision.

I eventually decided against receiving the revision procedure at the time, and still have yet to receive it. Our initial week spent at Texas Children’s Heart Center was an amazing experience, especially after meeting some of its incredibly talented doctors, including Dr. Franklin and Dr. Sussman. I learned so much that week. I felt comfortable and taken care of, which I hadn’t felt since leaving my pediatric cardiologist. My husband and I both knew we had found the right place with the right people to take care of me. While we were OK with simply flying to Houston once a year, we realized we needed to be closer to Texas Children’s after a poor hospital experience in 2014. My husband was able to find a job in Austin within his company in the summer of 2014, and we were quickly living in Texas merely three hours away from Texas Children’s.

The journey that came along with handling my own healthcare and becoming my own advocate has not been easy, but rather frightening at times. It has made me realize while I can’t control what happens to my heart, I can do everything in my power to give myself the best shot at living a long life. I’ve gained so much knowledge about congenital heart defects and lifesaving procedures like the Fontan over the years on this crazy healthcare journey. Being a part of the CHD community both online and offline has helped pave the way towards many wonderful opportunities for me to spread awareness and advocate for CHD. The hope and inspiration I’ve been able to give to others throughout the years has blessed my life in so many ways. I’ve been able to meet so many amazing fellow heart brothers and sisters of all ages and some amazing heart parents, including two very special heart moms, Lauren and Jessica, who I’m now blessed to call my best friends. I feel grateful every single day for the wonderful family members and friends I have, including my truly amazing husband, Chris, and my loving parents who fought so incredibly hard to get me to adulthood. I can’t describe how great it feels to spread hope and knowledge to others, and I’m so blessed to have an amazing team of doctors at Texas Children’s, especially my adult CHD cardiologist, Dr. Lam.

Today, I’m doing very well when it comes to my health, with the exception of a few minor issues. My heart and liver are both currently stable. I don’t know what my future will hold, but I hope to live until 80 at the very least. Chris and I just became first-time homeowners last summer, and we’re looking forward to starting a family in the near future. Even though I’m not sure if I’ll be able to carry a baby, I do have peace of mind knowing my team of doctors at Texas Children’s will take great care of me. For now, I plan to continue to take things one day at a time and live life to its fullest. If you’re interested in following my journey, you can either follow my blog and/or join my Facebook journey group.

If you’re interested in learning more about Texas Children’s Adult Congenital Heart Disease Program, click here.

My father passed away in May 2016, and I’m dedicating this blog post to him in his memory. He was very proud of everything I had accomplished and overcome. I love and miss you, Dad!

Post by:

Lauren Bednarz, patient