Pectus Excavatum: Adult Treatment for a Childhood Condition
Shannon was diagnosed with pectus excavatum as a toddler. But she was an adult when she had it surgically repaired at Cincinnati Children’s
When she was a toddler more than 20 years ago, Shannon Zonca was diagnosed with pectus excavatum. This condition causes a depression in the chest when the sternum, or breastbone, is abnormally pushed inward. In many cases, it can be quite severe, pressing on the heart and lungs and negatively altering their function. This condition often gets worse during the growth spurts that occur during late childhood and adolescence.
Shannon’s condition became more pronounced as she grew. Her parents had Shannon’s condition monitored by a specialist throughout her teen years. Ultimately, Shannon and her parents decided against surgery. At that time pectus surgery was more invasive than it is today, and the benefits didn’t seem to outweigh the risks.
As the years went by, Shannon struggled with breathing and exercise, which her doctors then diagnosed as asthma. She also suffered with self-esteem issues, a common side effect of pectus. The chest depression can cause kids and teens to feel self-conscious because it makes them look and feel different from other kids.
After college, Shannon’s chest pain worsened. Once she was out working in the business world, she noticed that just walking down the hall at her office would leave her out of breath.
This can’t be normal,” thought Shannon, who works in e-commerce. She wondered if these symptoms could be related to her sternum pressing on her heart and lungs. In her mid-20’s, Shannon decided to research her childhood condition further, and see if it might be related to the struggles she was having.
An Online Search That Changed Her Life
She sought the advice of physicians near her hometown. “At that time, I discovered I had about a 60 percent lung capacity,” Shannon says. Despite this, she was given the impression that her pectus wasn’t causing her medical difficulties. Pectus surgery at this point in her life, she was told, would be more for cosmetic reasons.
Shannon wasn’t convinced. She got online and searched some more. That’s when she came across a pectus message board. She dug around and discovered a few posts by others who had been treated for pectus as adults. One name kept popping up: Victor Garcia, MD, with Cincinnati Children’s, a pediatric surgeon who performed surgery on kids with pectus, but also treated adult patients.
Shannon wondered, if he had helped these other adults, could he help her too? She quickly wrote an email, attached her CT scan, clicked “send,” and then waited.
“Within a day, he got back to me and said he would be happy to meet with me,” Shannon recalls.
So she scheduled an appointment, and made the six-hour drive from her home in Grand Rapids, Michigan, to Cincinnati to meet with Dr. Garcia of the Chest Wall Center. “I really liked Dr. Garcia,” Shannon says. “He took the time to listen to my story and look at my CT. Then he told me about the Nuss procedure. I knew then and there that I wanted to do the surgery and he’d be the perfect surgeon to do it.”
A Shocking Discovery
Pectus excavatum is measured on a scale called the Haller index (named after one of the physicians who created it). A normal Haller index is 2.5. An index of 3.2 or higher is considered to be a severe case of pectus.
Dr. Garcia told Shannon that her Haller index was a 9.1.
He also explained the pressure her breast bone was putting on her heart and lungs, and that the resulting physiological limitations were what was causing her symptoms. It was quite possible her shortness of breath was not due to asthma after all, as studies of pectus patients undergoing the minimally invasive corrections of pectus excavatum have shown.
Four months later, in December 2013 at age 26, Shannon underwent surgery to correct her condition. “The staff at the hospital did a great job getting me connected to former patients who had their pectus corrected to help me make the decision,” Shannon says. “And then once the decision was made, they helped me prepare for the process.”
In the pectus repair procedure, her sternum was lifted to bring it up away from her lungs and heart. Two metal bars were then placed in Shannon’s chest to help her sternum essentially retrain itself to a new, more normal position. The bars will remain in her chest for five years, and then will be removed during an outpatient procedure. After that, her sternum should maintain its position, no longer putting pressure on her chest organs.
“The surgery was intense, but I was warned about that by Dr. Garcia,” says Shannon, who was able to return to work after five weeks. “I was pretty uncomfortable afterward, but the team at the hospital was great, even from a distance. They helped to reduce my pain meds when needed, and Dr. Garcia called personally to check in on me several times.”
Shannon says she was mobile again in three to four months. And after about nine months, she was back to her regular routine and a typical activity level.
Despite the lengthy recovery, Shannon is happy she had the surgery. “Looking back two-and-a-half years later, I’m so glad I did it,” she says. “I’ve had dramatic improvements in my lung capacity and stamina and overall ability to participate in normal activities.”
The cosmetic difference has been big for Shannon too. “I feel like I have a normal chest now,” she says. “I feel much more confident. Of course, some of that comes with age. But I don’t feel like I need to hide my chest or compensate for it with my wardrobe, which is really nice.”
It Was About More Than Just Herself
For Shannon, another factor spurred her decision to have this surgery. Newly married and looking forward to starting a family one day, she wondered how her breathing and endurance issues would affect pregnancy and motherhood. Says Shannon, “With a 60 percent lung capacity, I was concerned about getting pregnant and my ability to carry a child full-term.”
And now? “There is definitely a big difference before and after,” Shannon says. “I was able to start a workout routine and build up my stamina. I have more endurance. I can make it through the day with a good energy level.”
On top of that, two years after her surgery, Shannon and her husband Brad found out they were expecting a baby. Shannon’s fears were relieved as she maintained a picture-perfect pregnancy without any health concerns, endurance issues or breathing problems.
“I’m proud of myself for making it through the surgery and recovery,” Shannon says. “I’m glad I had it done because now I know I won’t have difficult choices in the future about health issues or having a family.”
The Zoncas lovingly welcomed a son, Jake Andrew, into their family in early August 2016. Says Shannon, “We absolutely love him and are enjoying being new parents!”