My Story

My Story

I’ve always found comfort in hearing when other people are going through a similar situation as myself. I find that it makes me feel more confident and reassured in my own path, as well as widens my perspective to all of the other individuals I am connected to. As I reflect on my own experience, I believe my 11 year old self would have benefitted from hearing the experience of another girl with Pectus Carinatum. So, I’d like to share my story with you all today. 

I first noticed there may be something wrong with my chest in gymnastics class. Wearing a tight leotard, other kids would ask what was in my shirt or if I had stuffed a sock in my leotard. Ha! From that point on, I became very self conscious of my chest and avoided tight clothes entirely. But the moment that led me to seek treatment is one I’ll never forget. I had gone out to dinner for my 11th birthday in a cute dress my mom had gotten for me, which happened to be tighter around my chest. At dinner, I became so insecure and upset about my chest that I actually left and changed my dress. This began our journey to discover Pectus Carinatum. We researched the condition and met with a few doctors to discover what our next steps were. Turns out, we had a long road ahead. 

At my first appointment, my chest was measured for flexibility, and the pressure it took to become flat was exceptionally high. I almost didn’t qualify for the bracing technique and my only option would have been surgery. Thankfully, I made it in the threshold that allowed bracing to be an option. While this was great news, and I was lucky to be in a position to correct one of my greatest insecurities, my younger self was not pleased. I was incredibly upset and intimidated by the metal brace I was going to have to wear. I thought it was big, bulky, and uncomfortable, and I became angry at my situation. Heading into middle school, I thought the last thing I needed was to wear a chest brace for 23 hours a day. 

Ultimately, my bracing treatment lasted 3 years, from when I was 11 to 14. In the beginning, I hardly wore the brace, and I was in deep denial about my condition. One of the things that made it so difficult was that hardly anyone knows about Pectus Carinatum. I always compared the condition to scoliosis and that bracing process, which nearly everyone recognizes and understands. With Pectus Carinatum, on the other hand, people don’t understand the condition or the bracing solution, which definitely made it more difficult for me to wear the brace in public. However, as the year progressed, I became much better about wearing the brace. It was definitely a learning curve, but I was wearing it consistently when I was home, and even to school a few times. 

This went on for a couple years, and I made good progress, particularly with the flexibility of my chest. But, as I entered 8th grade, I wasn’t seeing the visible solution I had hoped for, especially heading into highschool. So, against the doctor’s recommendations, I tightened the brace much further than it should have gone. I cannot discourage this enough. With this dangerous modification, I actually hurt my rib cage and caused my chest to ache nearly every day, but I was still unsatisfied with the appearance of my chest. So, I decided to have surgery to remove the excess cartilage on my chest the summer after my 8th grade year. The surgery essentially removed any indication of Pectus Carinatum, and I finally had the flat chest I had hoped for. 

Now, looking back on this experience, I would definitely say I did not handle the situation with poise or grace. But, I got through it. It’s ok to experience ups and downs throughout this process, and it’s ok to be frustrated. As difficult as it may be at times, there are solutions and you will get through it and grow because of it. 

A Parent’s Experience

Learning that Paige had a condition that would require round the clock bracing and potential surgery to correct was heart wrenching.  Yet knowing that as a parent we needed to do everything we could to help her overcome this obstacle kept us focused on providing the words of encouragement she needed to continue with her treatment.  We let Paige have control over her use of the brace while also explaining how her future self would thank her for remaining diligent.  Navigating the course together ultimately led to her success in conquering Pectus Carinatum.

Why Aspen Grove

I wanted to share the meaning behind aspen groves and why we are The Aspen Grove support group. Aspen trees are one of the most beautiful, unique organisms in the world. While they appear to be individual trees, aspens are connected by a deep, intricate root system that shares resources and support. Our community at The Aspen Grove is not unlike these trees. Alone, we are beautiful and strong, but we are made stronger by the support and connection we share. It is that connection that allows us to prosper, forming a powerful, united aspen grove.