As a child I have always felt that something was different or abnormal about the way that my chest sank in. I always thought the inability of taking a deep breath was strange.
I was born and raised in a small town in Southeastern Arkansas. According to my parents, my regular doctor visits subsided around age six, so my condition remained a mystery. Growing up, I was not really athletic, otherwise this journey may have been different.
My story began over three and a half years ago upon receiving a call from my mother advising of the results from a recent echocardiogram of her heart. She explained that the doctors found a heart murmur, and her heart was not beating properly. My initial reaction given our family’s history was to contact my primary care physician to discuss my concern that this could be related to the breathing problems I had all my life. I scheduled an echocardiogram of my heart and awaited the results, hoping to get an answer. Why do I have this huge indention in my chest? Why can I not take a full deep breath? Is this all related to me having heart disease?
The day finally arose for the test which was the easy part; the hard part was waiting, something that I am definitely not good at. The results revealed compression of my heart, but the cause was not clear. In order to get a better understanding of my heart and the compression, a cardiac MRI was ordered. Again the day of the test arose and more anxiety, but I was hopeful of getting one step closer to an answer. The day finally arrived when I received a call from my primary care doctor explaining that I had severe pectus excavatum — something I definitely had never heard of before. She explained to me how my chest was sunken in, and that my heart was being compressed due to this condition which was affecting my breathing.
Pectus excavatum is a condition where the sternum or breastbone sinks in causing a sunken chest. How have I lived with this for 37 years and not known? I was stunned at the results as was my doctor. What would be the next steps? I was the first adult patient that my physician had ever diagnosed this condition. Typically, pectus excavatum is diagnosed in the early teenage years and is more common in boys.
The next step was to receive a referral from my primary doctor to get an appointment with a specialist and discuss treatment options for pectus excavatum. The search for specialists who treat adults would be a journey in itself, as most cases are managed around adolescence by a pediatric surgeon.
I immediately started the search for doctors that treat adult patients with pectus excavatum in our area. Something I have learned as a mother is to do your own research first. From my search, I located an article from the Kansas City Star Magazine featuring an adult man similar to me in age that also had a severe pectus excavatum. Surgery was performed by local Pediatric Surgeon Dr. Corey Iqbal with The Pediatric Center at Overland Park Regional Medical Center. I thought to myself, “Maybe this doctor could also help me?”
I had lots of unanswered questions but trusted my gut. I didn’t need a referral with my insurance so I took the initiative and made that first call to his office. I spoke with the staff explaining my diagnosis in hopes of light at the end of the tunnel, and hopeful that this pediatric doctor might be willing to also take on my case. I made that initial appointment and followed up with my primary care doctor. I explained that I had found a new doctor instead of the one they first suggested.
The day finally arrived for my initial appointment with Dr. Iqbal and I was so excited in hopes of seeking answers. I can’t say enough of how I was thoroughly impressed with Dr. Iqbal. His bedside manner helped me put all of my anxieties about the unknown at ease. What are the next steps of this uncharted journey? Although I was climbing into new territory, I always trusted my gut and felt that with Dr. Iqbal leading the way, I was going to be OK.
From that first visit, I learned that I was the first adult female patient that would be treated by Dr. Iqbal. Although that was a little scary to think that I would be the first, again I trusted my gut. He explained my diagnosis in more detail and all of my options. Although surgery caused me more anxiety, I knew that was the path that I needed to follow in this journey. Surgery would include placing a Nuss bar in my chest under my breastbone that would need to stay inside for approximately three years. The bar would help push my 3.5 centimeter indention in my chest back out. The thought of finally being able to breathe properly and have a bra and bathing suit fit properly overjoyed me.
We also discussed a new technique alongside my general anesthesia called cryoablation to help manage my pain during and after surgery. The technique would involve freezing the nerve cells in my chest to help minimize pain, reduce my hospital stay and reduce my need for pain medication. Today, I would use this pain management technique all over again. I lucky to be able to have this new technology added to my surgery, and it helped block out my pain. Recovery wasn’t too bad, and it was the greatest feeling ever to be able to take a deep breath for the first time in my life.
Throughout the three years, the bar was sometimes uncomfortable and although I declined to have it removed early, I kept thinking about the end results and that I could carry this to the end. This past July, was finally the day that the Nuss bar would be removed, and I could wear a bathing suit and look and feel normal again! The surgery was outpatient and would only be a few hours and I would be back home again. There was literally no pain with the surgery, and I was able to go back to all of my normal activities within a day or so.
I now realize how this journey began and how trusting my own instincts lead to finding a great doctor that helped me find my life again. The ability to breathe normal is a gift that I would have to say with our current condition is a blessing that is easy to take for granted. From this journey, I realize how lucky I am. Although I was the first adult woman that Dr. Iqbal treated, I am not the last. A friend thanked me for paving the way for all of the other individuals that are traveling this journey. I have to say trust your instincts, ask questions, and do your own research. It changed my life and I am sure it can change yours as well.
Amy Newport is currently married with three wonderful children ages 14, 7, 6 and resides in Olathe, Kansas.
When your child is sick or injured, trust the expertise of The Pediatric Center at Overland Park Regional Medical Center to get them back to being a kid again. The Pediatric Center provides an excellent experience for kids and their families who are looking for continuity of care and the highest level of expertise at the bedside. The Pediatric Center offers:
- Comprehensive pediatric services treating newborns to teens
- Pediatric ER with short wait times
- Quick and convenient access to pediatric specialists including cardiology, endocrinology, gastroenterology, general surgery, neurology and orthopedic surgery
- A pediatric inpatient unit for children, which includes a medical-surgical inpatient unit and pediatric ICU staffed by pediatric hospitalists and intensivists, as well as specialty physicians, all with pediatric-specific training
- A Level III NICU, which is the most advanced NICU in Johnson County, offering care for newborns with serious health issues and babies born as early as 22 weeks gestation, also called “micro-preemies”