MY Pectus Story

I was born with a congenital condition where the cerebellum does not develop normally, Dandy-Walker Syndrome. Although I was unaffected by DWS, it sadly wasn’t the last of my deformities.

As a child, I loved playing outside, swimming, and watching tv. But as I entered adolescence, I began to notice that I didn't feel quite right. Puberty was already full of embarrassing changes, so you can only imagine how I felt when I found out my chest was caving in on itself. The first time I noticed my chest irregularity was during middle school. I googled, “why is my chest indented” and was astonished by how identical my chest was to the photos of Pectus Excavatum. My mind immediately imagined the worst, paralyzing my heart. I told my mom and she completely downplayed my concerns, saying it was nothing. So, I listened.

Years passed, and I moved to Las Vegas, NV, in January 2020. My mom became curious about my abnormal chest and decided to bring it to my doctor’s attention at my annual physical appointment. Just a glance at my chest was enough for my doctor to refer me to a cardiologist. There I was diagnosed with a deformity that affected my lungs and made it difficult for me to breathe, it was Pectus Excavatum. I was told I had a slow leak in my valve and that my concave chest was not severe enough to have “unnecessary surgery”. To say I was relieved was an understatement. As a result, I began to live life grateful for my good health. Yet, It wasn’t until May of 2021 when I moved to Sacramento, CA, that my chest reemerged as a topic of interest. During this time my cardiologist referred me to a thoracic surgeon for further examination. Chest x-rays uncovered scoliosis and the true severity of my condition. To put into perspective, Severe Pectus Excavatum has a Haller Index greater than 3.5 and my Haller Index was 12.6. The surgeon recommended that I undergo surgery as soon as possible. This surgery is called the Nuss Procedure, which is when the surgeon reserves the Pectus Excavatum by placing a curved metal bar under the breastbone. Unlike other surgeries, I was required to have two bars implanted into my chest. I was terrified, but I knew that it was the best option for me to live a long fulfilling life.

We planned the surgery for December 14th, 2021. I had to do numerous tests before having the surgery: Namely a Spirometry, a nickel allergy test, an EKG, chest x-rays, and a CT scan. We also bought a recliner because I was restricted from sleeping on my side for 6 weeks post-surgery. I spent the time leading up to it feeling anxious and uncertain. I didn't know what to expect, and I was worried about the recovery process.

On December 14th I arrived at the hospital where the nurses withdrew my blood in case of an emergency blood transfusion. The nurses led me to a room with a hospital bed, and I was told to change into a hospital gown. I was given a blanket, pillow, and charger while a support dog came to alleviate my apprehension. The staff was warm and supportive, and they did their best to put me at ease. Afterward, I said farewell to my family, and the nurses trundled me to the surgery room. As we traveled through the lively hallway full of medics, reality hit me. Suddenly I was tossed onto the surgery bed, 1-2-3 I was out.

I awakened heavily drugged and brainless. I laid in bed, sore, and examined the room I was going to live in for 5 days. Nurses came and left, and the food wasn’t dreadful. I was constructed of tubes and wires, and I couldn’t walk. I felt like C3PO. I spend most nights restless because of the nurses and the terrible agony. One night I had horrific muscle spasms that made me howl hysterically. Most of the day was spent watching TV and relearning how to walk with a physical therapist. I couldn’t shower and I was extremely constipated because I hadn't gone to the bathroom in days. My reflection emerged cadaverous and my spine was meandering. I mourned myself.

I exited the hospital in a wheelchair. At home, I attempted sleeping in the recliner but my back didn’t agree with it. I was a baby, sleeping, sponge bathing, and exercising my incompetence. I couldn’t twist my body, nor sleep on my side, I couldn’t work out, nor bolster over 5 pounds, and I couldn’t bend low or reach up high. I took a month off of school, including the winter break. It was demoralizing going back to school. Because of my restraints, I unwillingly used a rolling backpack as a sophomore in High School. I was ashamed and humiliated. My plans of playing tennis vanished and my attempt at running track abashed me, my body just couldn’t keep up. I felt like a desolate failure.

As restrictions diminished my life slowly began reaching normalcy, besides the occasional discomfort from my bars. Still, I have a year until my bars are removed.

My journey isn’t over.