'A New Way to Breathe': Living with Pectus Excavatum
Young athlete’s life changes after surgery at Cook Children’s
By Ashley Parrott
Miami Robertson was a 14-year-old high school athlete with debilitating asthma, or so she thought.
It wasn’t until her friend noticed Miami’s breathing problems and a sunken chest that she was diagnosed with pectus excavatum.
“I sucked on an inhaler for three years before I became best friends with Cassie, my literal lifesaver,” Miami said. “When the inhaler never actually did the job it should have, Cassie became concerned and started looking for symptoms herself. Her older brother, Curry, had previously been diagnosed with pectus excavatum and was treated at Cook Children’s.”
Miami began to doubt the asthma diagnosis when her symptoms worsened with no relief from her inhaler. She took her friend’s advice and began to research pectus excavatum and quickly realized many of her symptoms matched the diagnosis.
“Of course the coaches and parents self-diagnosed me with asthma, but who would have known any better,” Miami remembers. “I had trouble breathing, even just jogging a simple lap around a track.”
Pectus excavatum (PE) is a condition where the breastbone in the chest is sunken inward, causing breathing difficulties and in rare cases mild cardiac issues.
PE can often be hereditary; Miami’s family soon realized her mother may also have the condition and was unaware until Miami was diagnosed.
“Although no one has previously been diagnosed with PE in my family, it may have been due to lack of knowledge,” Miami said. “My mom has always had a depression in her chest, but has never experienced any shortness of breath or any other symptoms that I experienced.”
Miami’s case was different from most with PE. It usually presents in younger children, particularly boys, but in some cases it may start to emerge during puberty.
“It originally began in the seventh grade while I was playing basketball at the YMCA,” Miami said. “I remember feeling as if I was trapped under a huge rock, like something was holding me down.”
Pectus excavatum can make breathing a chore, but Miami didn’t allow her breathing difficulties to stop her from her love for competition.
“The week before volleyball season of my sophomore year, I ran 13 timed miles before I finally conquered those long four laps with a time of 8:57,” Miami recalled. “But this was just normal for me. I grabbed my inhaler, wiped the tears off of my face, and staggered up the hill to the field house.”
Miami was referred to Cook Children’s, where she met José Iglesias, M.D., a Cook Children's surgeon who specializes in pectus excavatum, and eventually found treatment. Her surgery, called the Nuss Procedure, placed a curved steel bar underneath her ribs and sternum, which allowed for the sternum to rise and eliminated the sunken chest.
Miami’s recovery involved a week-long stay at Cook Children’s and limited activity at home for two months post-op, where she did breathing exercises in hopes the procedure would ease her breathing difficulties.
“If the cause of their difficulty breathing appears to be from the chest wall compression, then they have an excellent chance of relief. With correction, they feel significant improvement after initial recovery of the procedure and often additional improvement after removal of the bracing bar,” Dr. Iglesias said.
While in recovery at Cook Children’s, Miami made friends with staff and volunteers, who celebrated for her accomplishments and even washed her hair.
“When I was first able to walk on my own again, the nurses at the stations on each end of the circle hall would cheer me on as I slowly but surely put one foot in front of the other,” Miami said. “I still have the stuffed bear that I picked out off of the huge cart of animals that rolled into my room one day.”
Her procedure didn’t guarantee she would be able to breathe any better, but Miami held onto hope that her breaths would become effortless.
“Although it was said that the Nuss Procedure wasn’t sure to increase my lung capacity, I had faith that it would,” Miami said. “Little did I know that the next time I stepped foot on a volleyball court I would have a bar in my chest, turning my A game into my A+ game.”
A few months after her surgery, Miami began to see a new way of life with a new way to breathe. As she eased into more activity, she soon after dove back in to her athletic lifestyle, beginning with the mile that once gave her so much trouble.
“I was allowed to do some light activities geared more toward my legs,” Miami said. “Before long, I started bumping the volleyball to myself, rotating through some drills, and running the mile with my teammates. My first mile with the bar clocked in at 8:39, and not a tear was shed.”
Now 19 years old, Miami finally feels the relief of a deep breath. Although it was a difficult road to a diagnosis and recovery, Miami is still thankful for her struggles. Her perseverance allows her to stay in the game.
“My life was and is the best adventure I have ever been on. Even when I was battling PE, I was living life to the fullest,” Miami said. “I never let it keep me from participating in the sports that I loved, but it sure was a relief when I didn’t have to fight it any longer.”