Pectus Excavatum! Sounds like an incantation from Hogwarts. Nope! It is what our 16-year-old son, Sam, was diagnosed with in July 2014.
We always knew Sam had a noticeable indentation in the middle of his chest, but never thought the pediatrician would tell us, “This looks more pronounced since last year. Sam needs to have some tests done to make sure it isn’t causing any heart or lung function problems.”
We never connected the dots that our athletic 6’5” child had any reason to be so winded while playing tennis—to the point that he could no longer keep up. Instead, we truly believed he was burned out on tennis when he told us he didn’t want to play any longer. No significant health complaints other than we noticed some shortness of breath with any physical exertion.
He was playing LOTS of music: upright bass in one band, keyboards in another band, and taking electronic sound production classes whenever possible. Until the pediatrician in New Albany, Indiana, pointed out that there really could be a problem, we just figured that sports were no longer “his thing” and because he was so content playing music, we didn’t think much about why he dropped out of sports.
Sure enough, after a pulmonary function test, an echocardiogram (heart ultrasound), and a CT, we were told that Sam had severe Pectus Excavatum — PEX, as I like to call it. It’s a much friendlier sounding term, right? I much prefer friendly terms when we’re talking about our son’s chest wall deformity! PEX. What causes it? What does it cause? How is it fixed? Who fixes it? Who has fixed it the most? Of those who have fixed it, what is their success rate? And on and on and on…ad nauseam.
Yes, we are those parents. We read everything we could get our hands on. As we researched, the name Victor Garcia, MD, at Cincinnati Children’s Pectus Center continued to come up – so much that we decided to take Sam there for his consultation, even though Southern Indiana/Louisville, KY area is our home.
When we were told that Sam had a condition that was causing him to have decreased pulmonary function and his heart to be compressed and displaced, we paid attention. We understood that this condition was not life threatening, but having this corrected would be life changing for Sam. He understood that the initial recovery would be the hardest part, but knew we were all there for him. In fact, his words to me were, “Mom, I think you’re more worried about this than I am. I know it will be a few hard weeks, but I’ll be fixed forever. I can be done with this.” Ok then. Let’s do this.
On October 27, Sam underwent a surgery called the Nuss Procedure, in which Dr. Garcia placed two surgical steel bars between his sternum and heart which were then manipulated to push his chest wall outward. This maneuver gained Sam a full “two fingers” worth of much needed space for his organs to go back into their intended places – and to function at normal capacity.
He came out of surgery singing. Of course he did —did I mention he’s into music? But we had been warned that there would be a “honeymoon period” for the first few days. They didn’t lie to us; the next four days were rough. But they were there to help Sam through it all. On the fifth day, we drove Sam home where he comfortably healed and got back into his normal routine slowly.
Ninety days later, Sam is doing extremely well and ready to begin some physical activity again. In fact, as we make a few college campus visits over the next few months, we are meeting several tennis coaches, too!
That is Sam’s PEX story. Obviously the shortened, blog-friendly version of Sam’s story. But now I want to tell you Sara’s story. Have you ever met somebody to later realize that you are supposed to know them? We feel that way about Sara.
As part of our preparation for Sam’s one week trip to Cincinnati for his PEX surgery, and then his three week restriction on most things, I thumbed a text to Sam’s band members and their families about his upcoming absence.
Of course, every other person I had told about PEX said, “I’ve never heard of that,” so I took great care in describing the details of the condition and the correction. You can imagine my shock when within minutes I received a reply from Sara, the 16-year-old singer in this band, “I think I have that. I just wanted to share that with you. My mom really wants to talk to you soon.”
I was floored. I’m not a clinical person, but I researched enough to understand that this isn’t the most common of conditions. I believe it is more common in boys than girls. I also believe it is more common to have it repaired for cosmetic reasons, as opposed to it being considered medically necessary – as Sam’s and Sara’s cases were. Surely not, she probably doesn’t have PEX, too. Keep in mind, we had just met this family several months earlier as Sara and Sam were randomly placed in a band together based merely on their musical interests and ages. What an odd coincidence this would be.
When Sara’s mom, also named Jennifer, and I spoke shortly after we got home from Cincinnati, I couldn’t get over what she told me. She had taken Sara to two different doctors – and when she questioned them about the hollowed out looking area in Sara’s chest, that also caused some chest pain and shortness of breath, both told her to take some ibuprofen and that she’d be fine. She asked me what I thought. I told her that I thought she should get another opinion! I told her the name of Sam’s pediatric cardiologist and that it was worth a visit. That after an echocardiogram, she’d have a better idea of what was going on with Sara.
Sara had the tests done, and sure enough – it was PEX! Severe pectus excavatum. Sam and Sara talked. He showed her his scars. He told her about how the first few weeks were hard, but it got easier. Jennifer and I talked about our sleepless nights, heart palpitations and panic attacks we both had thinking about the procedure and the metal bars in our kids’ chests. The bond was forming. Our kids and their families were learning a new language together and experiencing new emotions together. Sure, our kids were in a band together – but who knew this “friendly PEX” would be another significant connection between our families?
Sara’s situation became more complicated when her dad had a serious heart attack a few weeks before her surgery, from which he never recovered. Sara had surgery on December 31 in Cincinnati, the very same day that her dad passed away back home in Louisville. Our hearts were broken for Sara and what she must be feeling, physically and emotionally. We went to Cincinnati to see her the very next day. We needed her to know that she was not alone and that we would do anything we could to support her.
The 4-Bars Bond
Now that her initial recovery is well underway, Sara is back at band practices and singing her heart out as they prepare for a busy spring and summer performance schedule. She and Sam text when they are experiencing new sensations within their chest walls – a normal part of the healing process. They confer about the discomfort a sneeze can cause when you don’t brace for it.
They’ve discussed the humor in changing the band’s name from “All The Motions” to “4 Bars.”
They have an awkward hug when they greet each other—one that only two kids with surgical steel bars in their chests really understand.
They have bandmates who have been there supportively awaiting their return. They have families who have peace knowing their kids’ medical team is the best available.
They have each other to talk about this potentially scary procedure, the recovery process and the life changing aspects of correcting Pectus Excavatum at Cincinnati Children’s.
PEX. Who knew?