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Breathing Easy

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Alice Warchol

Chest wall surgery restores stamina, helps teen achieve goal to play Division I soccer

Throughout her childhood, Madeline Allburn remembers picking out loose-fitting clothes so that no one could see the way her lower ribs stuck out.

Kidstuff_Breathing Easy_Madeline Allburn 1As she entered her pre-teen years, the flare of her ribs became more pronounced, especially on her right side. She couldn’t lie on her stomach comfortably. In her soccer uniform, her ribs stayed hidden. She could forget about them unless another player knocked into her, which would hurt.

Her mother, Lauren Allburn, remembers the heartache of watching her daughter struggle with the way she looked.

“When Madeline would wear a bathing suit, her ribs would noticeably protrude,” Lauren says. “She felt very self-conscious.”

To the Allburns, Madeline’s rib flare was more than a cosmetic issue. They worried about the psychological toll it was taking on their 12-year old daughter. Fortunately, a close friend of the family – a pediatric surgeon practicing outside the region – and Madeline’s own pediatrician, Dr. Kristina Powell, of Pediatric Associates of Williamsburg, were both aware that the premier center for pediatric chest wall treatment was right around the corner at CHKD. They referred the family to CHKD surgeon, Dr. Frazier Frantz, who recommended monitoring Madeline with periodic visits as she grew.

Unbeknownst to the Allburns, this was the beginning of a medical journey that not only revealed a serious chest wall defect in Madeline, but also in her sister, Clare. The sisters are sharing their experience to give hope to other young girls who have a chest wall deformity.

Madeline had pectus excavatum – a condition where the sternum and rib cage grow abnormally, giving the appearance of a sunken chest. It’s much more common among boys than girls. It can show up at birth or develop during puberty, becoming more severe with growth spurts. In serious cases, the depression of the chest wall can crowd the heart and lungs. A child with pectus excavatum may have chest pain, tire easily, and have a hard time breathing during exercise.

During an exam when she was 14, Dr. Frantz determined that Madeline would need surgery. In addition to the rib flare, her sternum was starting to cave in. The Allburns were stunned.

“Her sternum was getting close to the point of pushing on her lungs and heart,” says her father, Sean Allburn.

The surgery would have to be scheduled soon, because the older Madeline got, the harder it would be to reconstruct her chest wall. During a breath test, the Allburns realized how serious the situation had become. Their daughter wasn’t using her lungs to full capacity. It explained why the star athlete would sometimes tire more quickly than her teammates.

Kidstuff_Breathing Easy_Madeline Allburn 2Dr. Frantz and the Allburns came up with a plan to minimize the surgery’s impact on Madeline’s blossoming soccer career. Several colleges were already recruiting her. If they timed it right, Madeline could be back on the field in time for the spring season of her freshman year.

Like many parents whose child faces surgery, the Allburns started researching any information they could find about their daughter’s condition. It was then they realized that CHKD attracts patients with chest wall deformities from all over the world.

The hospital is home to the Nuss Center, named after Dr. Donald Nuss, a CHKD pediatric surgeon who revolutionized the field of chest wall reconstruction when he invented a minimally invasive surgery for pectus excavatum. During the Nuss Procedure, as it’s now referred to worldwide, a curved metal bar is inserted under the ribs and sternum through small incisions on each side of the chest. Once in place, it’s rotated 180 degrees to push out the sternum.

“It creates a space where the heart should have been,” Dr. Frantz says. “The heart moves back to its proper position.”

The bar stays in place until the new chest wall shape becomes permanent. The procedure works best on young patients because their bone structure is still flexible.

Following the success of the Nuss Procedure, CHKD became an international center of research and innovation for chest wall deformities, providing many therapeutic options for patients such as Madeline, who required a different surgical technique to correct her condition.

The family met with Dr. Frantz who explained that to fix Madeline’s chest deformity, he would need to put a crack in her sternum. A metal plate and screws would permanently keep it in position. He would also remove portions of ribs from both sides to address the flare.

Dr. Frantz detailed how Madeline’s surgery would proceed. He answered every question they had.

“We knew we were in an outstanding facility,” Lauren says. “But we didn’t realize that the surgeons here are the best of the best at this type of surgery.”

Knowing that Dr. Frantz has performed hundreds of chest wall reconstruction surgeries gave the Allburns a great sense of comfort.

“Dr. Frantz won our confidence so fast,” Lauren says. “He put us at ease with his kindness.”

The Allburns braced themselves for the surgery. “Madeline was very scared,” Lauren recalls. “We just kept telling her it will be over soon, and you’ll be able to breathe better. It will look better, too.”

Lauren watched her daughter head off to surgery. When she was finally alone, the stress overcame her. Lauren sobbed so hard she could barely catch her breath.

Dr. Frantz told them the surgery would take roughly two to three hours. It ended up lasting closer to six. The surgical team kept the Allburns updated throughout the procedure.

“At one time, even Dr. Frantz got on the phone with us,” Lauren remembers.

When the surgery was over, the family was relieved to hear that Madeline’s repair looked great. “From start to finish, the staff at CHKD was phenomenal,” Lauren says. “They were amazing. I can’t say enough about them.”

After five days in the hospital, Madeline was discharged to complete her recovery at home in Williamsburg. The first week was rough. She had to sleep in an upright position. She wasn’t allowed to reposition her body on her own. Lauren dug out an old baby monitor from when the girls were little, so she would know if Madeline ever needed anything.

“For about a month, life was very uncomfortable,” Madeline recalls. Like many athletes, the hardest part of recovery was waiting to be cleared for activity. Initially, she was only allowed to work out in the weight room to strengthen her lower body. But, within three months of the surgery, she was back on the soccer field.

“Except for two tiny scars, it looks like I never had anything wrong with me,” Madeline says. “It’s crazy how much better I felt afterwards. Dr. Frantz really is the best.”

Kidstuff_Breathing Easy_Madeline and Clare AllburnWith Madeline’s recovery complete, the Allburns turned their focus to Clare, who, at age 12, was also showing signs of a sunken chest and rib flare. Fortunately, she did not require surgery. Instead, Clare could benefit from another treatment innovation offered at the Nuss Center – a vacuum bell device, which sits on the chest and uses suction to slowly pull the sternum into proper position.

Again, the Allburns felt overwhelmed with gratitude. “Sean and I often reflect how unbelievable it is that we live so close to CHKD, which was the only hospital using the device at that time,” Lauren says. “It’s a miracle.”

Clare used the vacuum bell for more than a year. She was embarrassed at first and didn’t like wearing it in front of people. It also was challenging with her school and soccer schedules, but Clare made sure to use the device for the recommended amount of time each day. As the months passed, her sternum flattened until she no longer had any depression to her chest.

“When I got the bell at first, I thought it was a really big deal,” Clare says. “But it’s not at all. It’s temporary and prevented me from needing surgery.”

Today, both girls are healthy and thriving on the soccer field.

Madeline carries a medical card that says she has metal inside. Her family likes to joke that she’s Iron Man, her favorite Marvel character. This fall, she will head to Wake Forest University where she will play Division I soccer.

Clare continues to sharpen her soccer skills with hopes of also playing at the collegiate level.

“We’re at a point now where we’re just incredibly grateful that both kids have gotten past a pretty notable health issue,” Sean says. “We just realize how thankful and lucky we are. We owe it all to Dr. Frantz and CHKD.”

Learn more about the Nuss Center at CHKD here. This story appeared in the Summer 2019 edition of Kidstuff magazine, a quarterly publication from CHKD that features inspiring stories about patients, families, physicians and friends of CHKD. Make a donation to receive Kidstuff magazine by mail.

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