Tara and Paul Romano were faced with difficult news when Tara was 12 weeks pregnant: an ultrasound revealed their unborn baby’s heart had shifted upwards in her chest. Her left lung wasn’t visible. 

Because the baby was still so tiny, diagnosing the abnormality was incredibly difficult.

Tara’s obstetrician/gynecologist (OB-GYN) referred her to the Center for Fetal Diagnosis and Treatment (CFDT) at Children’s Hospital of Philadelphia (CHOP). Expectant parents come from around the country and the world seeking help from this team of fetal experts.

Paige's fighting start to life

Tara went into labor five weeks early, with a team of doctors, nurses and respiratory therapists from both CHOP and the Hospital of the University of Pennsylvania (HUP) there with her in the delivery room. It was all hands on deck for this high-risk delivery.

The tiny baby girl, who many thought might not be born alive, came out yelling. She was moved right away to the Newborn/Infant Intensive Care Unit (N/IICU) at CHOP.

Meanwhile her parents chose a name — Paige.

A life-threatening diagnosis

A CT scan that night showed Paige was missing most of her left lung. A tube was placed in her windpipe (trachea) to help her breathe. Over the next few weeks, it became clear that in addition to the birth defect affecting Paige’s lung, there was something affecting her trachea.

After doctors in CHOP’s N/IICU removed Paige’s breathing tube during an emergency, they couldn’t get it back in. Neonatologist David A. Munson, MD, called in Ian N. Jacobs, MD, director of the Center for Pediatric Airway Disorders at CHOP.

Dr. Jacobs diagnosed Paige with tracheal stenosis, a condition where the trachea narrows due to scar tissue or cartilage. The only way to open her airway was major surgery—a risky procedure made even more dangerous because she had only one lung. Though Paige had only a 30% chance of surviving the surgery, the doctors felt it was the best way to try and save her life.

A critical decision and a new plan

On the morning of Paige’s scheduled surgery, Dr. Jacobs performed one last endoscopy to evaluate her airway.

“What I saw during that exam was critical to the decisions we made concerning Paige’s care,” Dr. Jacobs said. “Her stenosis had opened slightly, and we knew there was a chance it would continue to improve as she grew. Since she was facing a life-threatening surgery, we decided to wait and see.”

Even with this hope, it could take years for Paige’s airway to open enough for her to breathe normally. When she was two months old, Dr. Jacobs placed a tracheostomy (trach) tube in her neck, bypassing the airway malformation. But her challenges didn’t end there.

“Paige continued to have difficulty breathing, sometimes turning gray, even with the trach in place,” Dr. Jacobs said. “Our team worked closely with the neonatologists and discovered she had developed a granuloma—a mass of tissue that can form as a result of a trach.”

Once Dr. Jacobs removed the mass, Paige stabilized. Ten days later, after spending four and a half months in the N/IICU, she was ready to go home. She still needed ventilatory support, but her condition was improving.

The next chapter at home

Over the next three and a half years, Paige was cared for at home by her family and a live-in nurse. Dr. Jacobs monitored Paige’s stenosis during regular visits to our Center for Pediatric Airway Disorders. As anticipated, Paige’s airway continued to open without more invasive surgery. In July 2010, after three years of living with a trach, the tube in Paige’s airway was removed!

“Paige’s case is a perfect example of how a patient benefits when they’re cared for by a multidisciplinary team of specialists,” says Dr. Jacobs. “It was touch-and-go from the moment she was born, but the collaboration of our fetal team, neonatologists and airway experts made it possible for us to move fast enough to save Paige’s life.”

A healthy and fulfilling childhood

Over time, all that remained of Paige’s trach was a tiny scar. She began singing, dancing, running and taking swimming lessons. Though she still had very little left lung tissue, her right lung grew to make up for what she was missing, and Paige was living a healthy life.

“We think of Paige like a bumblebee,” says Tara. “Bumblebees shouldn’t be able to fly because their bodies are so big and their wings are so small, but they do, because they don’t know any better. She wasn’t even supposed to be born alive. She couldn’t speak and we never heard her cry. She’s a miracle.”

By age 11, Paige was a sixth grader who showed few signs of her earlier struggles. She was living a full life including playing field hockey, lacrosse and the flute, participating in Girl Scouts and doing plenty of cooking and baking. The last hobby was especially gratifying for her family because Paige initially had an aversion to eating by mouth because of her trach and earlier stenosis.

“She has a very full life,” says Tara. “When we ask the doctor if she has any restrictions, he says, ‘She’ll tell you on her own.’ Since she’s pretty strong-willed, she doesn’t miss much. She keeps up with the kids who have two full lungs. And she’s a foodie at this point. Her life goal is to be a baker.”

Another relief for Paige’s parents: how well she performed in school, especially in her favorite subject, math. “She coded a few times in the NICU, and I asked, ‘What does this mean for her future?’ She had blue spells before her heart was repaired,” Tara remembers. “None of it seems to have affected her developmentally. We’re in awe that she’s come all this way.”

Thriving as a teen and giving back

Now 17 and a high school junior, Paige is a multi-sport athlete, playing field hockey, lacrosse and sprinting for winter track. She’s exploring colleges that align with her academic and lacrosse goals.

Beyond sports, Paige gives back to her community by coaching youth teams and supporting local and national charities. Her family describes her as having an incredible sense of humor, a deep love for music, and a typical sibling rivalry with her younger brother. They say she was born a fighter—one who CHOP helped thrive.

Paige wears her scars with pride, knowing they tell a powerful story of survival, determination and perseverance.

*This story was originally published in September of 2012. It has been updated with Paige’s remarkable progress in 2019 and again in 2025.