Leigh’s story: Breathing easier after the Nuss procedure

Leigh always had to stop and catch her breath during outdoor games at church camp. Growing up, she was hospitalized with pneumonia nine times. She also loved to swim but had trouble finding bathing suits she felt good in because of her pectus excavatum, a condition where the sternum (breastbone) grows inward, toward the heart instead of straight. This can make the chest look caved in. Kids and teens who have it may experience chest pain, breathing problems and frequent upper respiratory infections.

When her family and pediatrician talked about potential treatments, they already had a good sense of what care might look like. Her brother, John, had surgery for the same condition with Adam Alder, M.D., Pediatric Surgeon and Chief of Surgery at Children's Health℠ and Associate Professor at UT Southwestern, a few years earlier.

“We felt confident the second time around because there was less fear of the unknown,” says Valerie, Leigh’s mom. “We knew Dr. Alder and we were very comfortable with him. It was a no-brainer.”

Learning about the Nuss procedure

Dr. Alder walked Leigh and her family through the Nuss procedure, where doctors surgically place one or more metal bars beneath the chest wall. Leigh would need two bars which, over time, push the chest outward and help the breastbone grow into a straighter position.

“They explained everything to me, made sure I was prepared and asked if I had questions,” Leigh says. “I also talked to my brother a lot. It was really nice to talk to someone who had been through it.”

They talked about what to expect and what it felt like to have a bar in your chest (a little sore in the beginning and then you stop noticing it).

John needed pain relievers for weeks after the surgery in 2016 – but Leigh likely wouldn’t. Now, the care team uses a combination of nerve blocks and freezing certain nerves in the chest area to reduce pain after surgery.

“Historically, this was an operation that hurt a lot and some people avoided the surgery because of that pain,” Dr. Alder says. “Kids used to stay in the hospital for four or five days after surgery and need narcotics for several weeks. Now kids on average go home in about a day and a half and some families don’t use any narcotics at all.”

Leigh felt nervous on the day of the surgery to put in her bars. And she remembers the nurse who took her hand to calm her as they wheeled her back for surgery.

“I felt really vulnerable, but the nurses helped me feel safe and know that I was in good hands,” she says.

Breathing easier

Leigh was home the next day and back in the pool a few weeks. Kids used to have to significantly limit their activities for about two months after surgery, especially avoiding movements that require bending or twisting. But now, Children’s Health patients have no restrictions thanks to research by Samir Pandya, M.D., Pediatric Surgeon at Children’s Health and Professor at UT Southwestern. His team’s study found no significant difference in outcomes between kids who did and did not limit activities after surgery.

“It used to be eight weeks of pretty much no activity,” Dr. Alder says. “Now we tell kids they can do anything they feel up to doing, but to stop if they experience any pain.”

Not long after the procedure, Leigh felt a noticeable difference in her breathing, especially when she swam.

Inspired by incredible nurses

Nearly three years later, it was time to take the bars out. Leigh wasn’t as nervous about the surgery this time. Mostly, she remembers waking up and wanting brownies.

“The brownies at Children's [Health] are so good!” she says. “The removal was easy compared to getting the bars in. I went home the same day. I took it easy for a few days and was pretty much back to normal the next week.”

Now, Leigh has no problem keeping up with other kids. Swimming is easier. She hasn’t been back to the hospital with pneumonia, which may be because she can take deeper breaths and clear mucus more effectively after surgery. She also stands taller and feels better about how her clothes fit.

"It's hard to look different than most kids your age. Surgery gave me a confidence boost,” she says.

If another kid or family isn’t sure about the surgery she’d tell them: It’s worth it.

“Having bars in my chest seemed scary at the beginning,” she says. “But now everything is so much better and I’m really glad I did it.”

These days, Leigh is getting ready for her final year of high school and beyond.

“I want to go to nursing school,” she says. “I’ve seen so many great nurses who helped me feel less scared and vulnerable. I want to be that person for somebody.”

Learn more

The Children's Health Center for Pectus and Chest Wall Anomalies is home to an expert team providing comprehensive care for every aspect of a child's health. We care for kids and families from diagnosis and surgery to recovery and long-term follow-up. Learn more about our program.