How one surgery inspired a career in nursing

By Lisa Turni, surgical unit nurse manager, CHOC Children’s

lisa-turni-rn-choc-childrens
Lisa Turni, surgical unit nurse manager, CHOC Children’s

I’ve been a nurse for 18 years, but the seeds of my career were planted long before I put on my first pair of scrubs. Although I didn’t know it at the time, having surgery as a teenager would ultimately inspire my career path.

Growing up, I was an athlete and especially loved playing basketball. Although I was in good shape, I was always out of breath and would hyperventilate often. I felt insecure because I thought I was giving my best at practice.

When I was 14 years old, my mom took me to the pediatrician who initially assumed I had asthma. But when my doctor lifted my shirt to listen to my breathing, she noticed a depression in my chest. I had always known it was there, but I thought that’s just how my chest looked. He diagnosed me with pectus excavatum, commonly referred to as “sunken chest.” This is when the breastbone, or sternum, and some of the ribs grow abnormally and cause a depression in the middle of the chest. Pectus excavatum is the most common congenital chest wall abnormality in children. Many cases of pectus excavatum are found in the early teenage years because growth spurts during puberty can exacerbate the chest depression.

I was referred to a surgeon, who explained that the depression in my chest was pushing down on my heart and lungs, which make it harder for them to work properly, and harder for me to breathe properly. He told me that I would need surgery to correct the deformity in my chest wall. I hadn’t realized there was anything I could do to fix it. He explained that during surgery, he would make an incision across my chest and reshape my rib cartilage which would keep my breastbone in the correct position.

As my surgery date got closer, I became more aware of the depression in my chest, and the way I thought about and saw myself started to change.

At that age, kids at school can be harsh. Sometimes they would unknowingly ask hurtful questions like, “Oh, why does your chest look like that?”

I started to realize I was different. Not necessarily all of the kids and comments were mean, but I was aware that I stood out. I changed the types of bathing suits and clothing I wore to hide the depression in my chest, a behavior I now know is common among pectus excavatum patients.

A physical abnormality is an emotional thing to shoulder as a child. It can be hard for others to understand how much it can affect a child emotionally. When I became a nurse, I used that understanding to inform the care I provided to my patients.

My surgery went well, and although that occurred in the days before the minimally-invasive Nuss procedure was invented, my surgeon was able to “hide” my scar near my bra line so it wouldn’t show in bathing suits or other clothing. The scar became a badge of honor. It was a sign of my courage.

My hospital stay after surgery is what led me to pursue nursing. I knew from that hospital stay that I wanted to help other kids. Some of my providers during that time got frustrated with me because I couldn’t take a deep breath or cough due to pain. Even though pain management has improved tenfold in the years since, the way my care team acted toward me has made me want to always treat patients better than they did.

After eventually getting my bachelor’s degree in nursing, I came to CHOC Children’s Hospital as a travel nurse. As soon as I stepped foot inside CHOC, I knew it was my forever home because of the people and culture.

I worked my way up to nurse manager of the combined medical/surgical unit. Later, when we created separate medical and surgical units, I chose to stay in the surgical unit. Giving back and taking care of patients undergoing surgery is my way of making a difference. I have a special connection with patients undergoing pectus excavatum surgery.

Even though my surgery was over 20 years ago, I’ve found that many pectus patients have similar journeys. When I share my story with my patients, I let them know they are not alone. When I was younger, I didn’t know anyone else who had this condition or understood what my surgery felt like.

Now, I do my best to connect my pectus excavatum patients with one another for peer-to-peer support. In fact, at CHOC, we’re developing a mentor program where former pectus excavatum patients, along with scoliosis patients, are trained to meet with new patients prior to surgery, and help answer their questions and be part of their support system alongside clinical staff.

I also make sure to be there for my patients’ parents as well. Parents often feel guilty for not noticing how deep the chest depression had gotten – but how could they have known? By the time their kids are becoming teenagers, the period during which pectus excavatum becomes most pronounced, they’re no longer in charge of bathing them and they’re not often seeing them without a shirt. I can comfort them in a unique way because my mom had similar feelings.

They are also understandably worried about their child’s surgery and recovery, and they seem grateful to talk to someone who is so many years post-surgery without any major complications. Parents usually have a lot more questions for someone who has been through it, and I spend as much time with them as they need. Thanks to our new mentor program, it has been amazing to see connections made between our parents and patients, and what a huge support that has been for them.

I’m grateful that I had pectus excavatum because it shaped who I am as a person. When I was younger, I didn’t realize how powerful nursing could be. I’m grateful this has been my journey because it feels right to be able to give back and to help patients and their families.

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What You Need to Know About Pectus Excavatum Surgery: Teen Mentors Explain

Having surgery is not easy, and no one knows that better than someone who has been through it.

CHOC Children’s patients who have undergone surgery for either pectus excavatum or scoliosis  have banded together to form a mentorship program for other patients who will be undergoing the same procedures. Teens and adolescents can connect with a trained mentor who knows what they’re going through and can help them navigate the physical and emotional aspects of surgery and recovery.

While it’s important to seek guidance from your medical team, sometimes as a teenager you just want to hear straight from other teens. We spoke with a few mentors who had the Nuss procedure to correct pectus excavatum (sunken chest), and they offered the following words of advice and encouragement.

What is one thing you wish you would have known before pectus excavatum surgery?

“I wish I would have known to just relax. I know it’s a hectic time; the number one tip from me is just to have a good night’s sleep and prepare. Bring all the essentials and more.”—Matthew H., now 17

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Matthew H.

“I wish I was more aware of the sudden diet change to ice chips during the first day of post-op care. I remember feeling uncomfortable about my inability to eat food or drink water a few hours after my procedure. If I knew how long I would be on ice chips after my procedure, I feel that I would’ve been able to push through it better than I remember.”—Matthew V., now 22

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Matthew V.

“The one thing I wish I had known before the surgery was how long each day actually was. You never really know how long a day actually is before you go through a surgery. I ended up only bringing my phone and a few books which I ended up rereading during my stay. There was only so much sleep I could get, and I found myself waiting for the next day; sometimes for hours at a time. If I could go back, I probably would have brought more things to occupy my time, not just my phone but also maybe my laptop, some movies and more books. My family and friends ended up being a really big part of my recovery and I can’t thank them enough. Their visits got me through the long days and I found myself up at night waiting for their next visit.”—Brandon, now 20

Brandon-pectus-excavatum-tips
Brandon

What modifications did you make after surgery?

“After surgery, I made sure to wear the most comfortable clothes and to have many pillows, especially since it’s impossible to lay on your side after the procedure.”—Matthew H.

“After surgery, I kept my phone near my bed so I could call one of my family members to help me get up every morning for the first two weeks. I also had to make sure that I was sleeping flat on my back and not turn over in my sleep. However, sleeping flat on my back in post-op helped me prepare for sleeping at home.”—Matthew V.

“We ended up actually propping my bed up a bit and angling it with pieces of wood. This made getting out of bed on my own a bit more manageable. I also developed a method of getting out of bed that I ended up using for almost two months after my surgery; I would bring my legs toward my chest with my hands while on my back and roll forward. This helped me avoid having to use my core to get up. Walking also became a pretty big part of my recovery experience. I would walk with my parents to the end of the neighborhood and back to try and regain some of my strength. I think the worst thing you can do for your recovery is to stay sedentary.”—Brandon

Knowing the recovery that comes with this surgery, would you choose to do it again?

“The month’s worth of pain is definitely worth a lifetime of improved quality of life. The month may seem like an eternity, but trust me, after the whole ordeal is over, you’ll be grateful that you’ve made the right decision.”—Matthew H.

“I would choose to do the surgery again. While it was a painful experience at first, the results you get from the procedure are well worth it.”—Matthew V.

“I would definitely do it again and I encourage anyone else reconsidering the surgery because of pain to do it. I ended up making a full recovery and I feel as if my lungs weren’t as limited after. I felt more comfortable doing sports and going out. The surgery made me feel more confident and comfortable in my own skin and in my opinion that’s worth the pain.”—Brandon

What advice would you give someone before their own surgery and hospital stay?

“If you’re a light sleeper, like me, make sure to bring earplugs or a speaker that can play white noise. There’s a lot of noise and that definitely affected my sleep time. Make sure you can swallow pills. I don’t know if it’s just me, but I couldn’t swallow the biggest pills the nurses gave me, so I had to use the pill crusher and that was not fun for 3 a.m. me. Eat a lot of food and walk around. I know after the surgery you may have a small appetite and not want to walk around. But eating more and walking around really sped up my recovery process. The spirometer really helps too. I left the hospital after four days.”—Matthew H.

“I would tell them that they’re in good hands and that the staff is very responsive and will take very good care of them. I’d also advise them to be patient with the recovery. Once the pain subsides, they’ll begin to feel the results.”–Matthew V.

“I would like to tell others considering the surgery that they aren’t alone. Dozens of us get these types of surgery at CHOC. You are in good hands, if not the best hands possible. Every person in the hospital – staff, nurses, doctors, etc. – is trying to make your stay at the hospital as comfortable as possible. While the surgery may seem like a really big leap of faith, just know that we’re all here for you and you can talk to any one of us, whether that’s staff or a patient. In the end we all want the same thing— for you, the patient, to feel better and recover as quickly as possible. So don’t feel alone, we’ll be here for you whenever you’re ready.”–Brandon

Learn more about having pectus excavatum surgery at CHOC

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Know the Risks of Pectus Excavatum (Sunken Chest)

Pectus excavatum, or sunken chest, is the most common congenital chest wall abnormality in children. Although some may think of the abnormality as purely a cosmetic problem, the limited chest cavity space can displace the heart as well as limit lung capacity, says Dr. Mustafa Kabeer, a pediatric surgeon at CHOC Children’s. Fifteen percent of patients can experience arrhythmia (an abnormal heart rhythm) or mitral valve regurgitation, wherein the heart valves allow blood to leak back into the heart, as a result of the inward compression from the sternum.

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Dr. Mustafa Kabeer, pediatric surgeon at CHOC Children’s

Surgery to expand the chest wall can eliminate many symptoms. The pediatric surgeons at CHOC perform the Nuss procedure to repair pectus excavatum.

The Nuss procedure is a newer, minimally invasive procedure that dramatically reduces the appearance of incisions and the time spent in the operating room. A small incision is made on either side of the chest, and a small camera is inserted for observation as the surgeon passes a thin, curved metal bar through the chest cavity below the sternum. When the bar is flipped, the sunken chest is instantaneously repaired. The bar remains in place for two years, and is periodically monitored by a pediatric surgeon.

pectus-excavatum-illustration
During the minimally invasive Nuss procedure, A small incision is made on either side of the chest, and a small camera is inserted for observation as the surgeon passes a thin, curved metal bar through the chest cavity below the sternum.

A historical approach to these surgeries involved a large incision across the chest, and up to six hours in the operating room as the chest wall was taken apart and then reconstructed, known as the Ravitch procedure. There can also be significantly greater blood loss with the Ravitch procedure, and virtually none with the Nuss procedure.

The pectus excavatum team at CHOC is comprised of experts in pediatric pulmonology, cardiology and surgery. The multidisciplinary team performs various tests to examine heart and lung function, before and after surgery. By using the latest techniques in minimally invasive surgery, along with recent improvements in pain management, patients are able to return home and get back to their daily activities sooner than ever before.

Although the cause is unknown, 40 percent of patients report a family history of pectus excavatum, and 40 percent of cases occur in tandem with scoliosis, says Kabeer.

Parents may notice an indentation in their child’s chest wall either when they are first born, or closer to puberty, when changes in the chest wall can become more pronounced.

“When pectus excavatum presents itself closer to puberty, it may be difficult for parents to notice, since teens or pre-teens are more clothed than they were as babies, so their parents might not see the change in their chest wall right away,” says Kabeer.

Warning signs tend to be subtle, but if your child experiences frequent shortness of breath, difficulty breathing during exercise, chest pain or light- headedness, or otherwise is not able to keep up with their peers, consult your child’s primary care physician, who may refer you to a pediatric surgeon or pectus excavatum specialist.

VIDEO: Get more answers to pectus excavatum questions

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