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.”

Who were they kidding? There's no emotional prepping anyone could do at that time. So, off to the OR for delivery we went. Talk about scared! They gave my baby a 10 percent chance of survival and they gave me a death sentence if they didn't deliver right then and there.

Graysen was brought into this world three months early weighing 1.4 pounds and not crying, or breathing. I remember seeing that he was the size of the nurse’s hand when she was working on him. I got to take one look at him before they had to intubate him immediately to get him breathing, since he was turning blue.

They then hurried away with him to the delivering hospital’s NICU. He was supposed to be born on March 15th (spring break baby) and he came into this world right before Christmas. With only a diaper the size of a tiny flip cell phone (which was the phone we had 10 years ago!), and under a heat lamp for warmth, inch by inch, ounce by ounce, he grew.

Weeks into life, the doctors decided to start feeding him by NG tube (Nasogastric tube that runs through the nose and into the stomach for feeds).

He did fine tolerating the feeds until he got an infection in the intestines, called necrotizing enterocolitis, also known as Nec. This made his belly swell up and, if not cured properly, could have resulted in a hole in the intestines, which is fatal. Surviving Nec was thought to be low. The doctors called to inform me that he was not doing so well and needed to be transferred by Teddy Bear Transport to the Medical Center’s NICU.

They loaded him up and took him by ambulance after two months in the NICU where he was born to begin his next few months of growing. Cook Children’s slowly nursed him back to better health, and, luckily, Graysen did not need surgery on his intestines. Miraculously, he pulled through another obstacle.

Weeks went by before they attempted to feed him again. In the meantime, the doctors had a central line surgically put into his chest so he could receive his nutrients properly. After a few weeks of feeds, the doctors started to see major improvement. They took him off the respirator and put him on a high flow nasal cannula to help with Graysen’s oxygenation and breathing. He did great with this new machine. Now breathing well, it was time to introduce the bottle at around 3 months. He took it, but not all of it.

The doctors had to decide what to do about the feeds he was leaving behind. They decided to put a G-button surgically into his stomach so that the left over feeds could be received by tube. This was the turning point. The hardest decision I had to make. Once that G-button was placed, I would have a medically dependent child.

After being in the NICU for five months, this was the only way he would be able to come home, and I was ready for that day. I gave the doctors the approval, and off to his first surgery he went. That was the first of 14 surgeries he would have throughout his first 10 years of life. Surgeries followed including fundoplication (an operation to prevent stomach contents from returning to the esophagus), hernia repairs, tonsillectomy, and a tethered spinal cord repair. Just to name a few. His spinal cord was taut at the end and neurosurgery was scheduled at 12 months. He caught meningitis after the surgery and, once again, beat dangerous odds.

Graysen went through so much that he didn’t eat. For six years, he was completely tube fed. He went through many years of intensive feeding therapy. He still didn’t want to eat orally. I put him in kindergarten and he saw his peers eating by mouth. That sparked an interest and, at 6 years old, he started eating. Now he demolishes whole cheeseburgers and fries! Not only has he beat death numerous times, he's gone through 14 surgeries and countless doctor appointments getting him to where he is now. This kid is here for a reason. This month we celebrate Graysen's 10th year of LIVING! Graysen is my Christmas miracle.

I could not have done this alone. I am so thankful that I had, and still have, a great network of people working together at Cook Children’s. Without their dedication to their job and to children, I don’t know if Graysen would have made it. Dr. Nancy Dambro was one of his main doctors from the time Graysen was born. Dr. Michael Deitchman has been his pediatrician through all the rollercoaster ups and downs. I can’t thank him enough for his support, countless visits and patience with us. We also see Dr. Jose Iglesias, Dr. Jill Radack, Dr. Bankole Osuntokun and Dr. Fernando Acosta.

It takes a village in Graysen’s case, and I’m glad our village is Cook Children’s!