Tyler Steck is feeling more self-confident these days and breathing a little easier.
The 13-year-old will no longer be hesitant to take off his shirt around other teens after having surgery to repair what is commonly referred to as “sunken chest syndrome.”
Diagnosed with severe pectus excavatum, a congenital chest wall malformation, Steck underwent 3.5 hours of surgery on Aug. 2 to help the condition that his mother, Cynthia Steck, said was “squishing” his heart and lungs.
The surgery, named the Nuss Procedure after the doctor who created the less invasive way of treating this problem than cutting open the chest, entailed very carefully slipping a stainless steel stabilizing bar through two small incisions on each side of the chest. Through use of a third incision that allows a camera to be inserted so the surgeon can see inside the chest wall, the bar is carefully placed in a plane between the bottom bone of the sternum and the heart.
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Usually performed in teens while the chest wall is still malleable, the bar stays in place for two to five years allowing the chest wall time to heal and become more rigid before being carefully removed.
Dr. Robert A. Cina, associate professor of surgery at the Medical University of South Carolina (MUSC), performed the “very patient specific” surgery.
Cina said the malformation of the chest wall may show up at birth but continues to appear more severe as teens reach puberty.
“We see a lot of young men too embarrassed to take their shirt off at the pool,” Cina said. “Women have to choose clothing very specifically. The condition affects their social development and can affect their formulation of sense of self.”
The national spotlight was placed on the condition during the summer Olympics when it was announced that U.S. swimmer Cody Miller has the congenital chest wall deformity that diminishes his lung capacity.
Cina said while many individuals, like the bronze medal-winning swimmer, live with the condition and function well without surgery, Tyler’s condition was severe.
“We do not take this surgery lightly,” Cina said. “Often times these deformities can become quite noticeable and we believe they need to be repaired after a long conversation with the parents. Having the surgery, however, comes down to the teen’s decision.”
“I think the decision to operate is very patient specific because at the end of the day, Tyler’s mom and I could talk all we want but Tyler had to make the decision,” Cina said.
“I never noticed it was affecting me until recently,” Tyler said prior to his surgery. “But I’ve been short winded. I think the surgery is going to make my life a lot better.”
Pectus excavatum, estimated to occur in 1 in 300 to 400 births and primarily in males, is evaluated through use of the Haller Index, an objective way to evaluate the chest deformity, Cina said. On the index, anything greater than a 3.2 or 3.5 gives reason to repair the chest. Tyler’s Haller Index was in the 7.4 realm considered the “severe” category. His CT scan showed the heart pushed severely to the left and squeezed in appearance rather than the shape of a normal heart.
While Steck’s condition called for surgery due to the degree of deformity of the chest wall, many youth and adults live with varying degrees of pectus excavatum. For some, like Tyler, the deformity does not show up enough to notice until they approach puberty.
“I have pictures of Tyler as a little kid and he had a normal chest,” Cynthia Steck said.
She started noticing a change about six months ago and realized her son had the condition. Since she also has pectus excavatum, she knew what was happening and how it would affect her son’s life.
“They treat it like asthma,” Cynthia Steck said of her diagnosis. “Being female, people didn’t notice mine much although I was very self-conscious during my teen years and was embarrassed about it. You just live with it all the time and don’t really think about that being the reason you can’t breathe. You just adapt. I usually just tell people I have asthma. It is easier than explaining you have a birth defect. That’s just very personal.”
Cina said a high family history of the condition suggests there is some genetic component. “To my knowledge, no one has identified the gene that causes this,” he said.
Making the decision to have Tyler’s surgery was also a financial one for the single mother of two. “There is some controversy over whether the surgery helps or not, but from my point of view, if it is affecting the internal organs and he is not done growing yet, it is necessary.”
After sharing her concerns with her co-workers at Creative Consultants Group in Conway, she was encouraged to set up a GoFundMe page.
“One of my bosses kind of initiated it because he wanted to help and he was the first donor,” Cynthia Steck said. “So that is how it got started.”
She said the surgery would cost approximately $7,000 more than her insurance would cover and if the page raises more money than she needs to cover Tyler’s expenses, she plans to “pay it forward” by donating to help another child needing the surgery.
To date, the page at http://gofundme.com/tylersurgeryfund has reached a little more than half the $7,000 goal.
Cynthia Steck said she hopes the page will serve double duty by bringing awareness to this condition. She posted daily updates throughout Tyler’s hospital stay and recovery to keep the donors informed and many of the donors posted their well wishes for a speedy recovery.
“The first few days I read the posts to Tyler and he was touched by them and surprised,” she said.
The postings on the page have already brought awareness to one grandmother who contacted the Stecks to get information on the doctors.
“She said she had never heard of it and that her granddaughter has similar symptoms,” Cynthia Steck said.
Cina and his partners at MUSC perform about 20 to 30 surgeries a year on “otherwise healthy and vibrant children.” The surgeries are typically scheduled for summer or Christmas holidays as the recovery time can take up to six weeks. The average surgery time is 2 hours or less. Tyler’s surgery took longer due to the severity of his case, Cina said, adding that the surgery went very well.
Tyler spent only a few days in the hospital before being sent home with a pain management protocol. He also became involved in a pain medication study. Even after he went home, he was restricted from using his arms and could not sit up on his own or lay face down. He was not allowed to raise his arms over his shoulders or lift anything for several weeks. Even with all the restrictions and pain, his mother said the normally very active teen remained in good spirits.
By the time Tyler was released by the doctor to resume his routine activities, he was ready to begin eighth grade at Ocean Bay Middle School having missed only a few days.
“We have been so blessed to have Dr. Cina…and the talented staff at MUSC for taking such good care of Tyler. It's amazing how quickly he recovered from this surgery,” Cynthia Steck said. “I am very pleased with the way it turned out. Time will tell if it makes a significant difference but just the fact that he doesn’t have the pressure on his organs is a relief to me.”
Freelance reporter Angela Nicholas can be reached at firstname.lastname@example.org.