Twins Gabriella (Gabby) and Julian were born at 28 weeks on Feb. 24, 2021. Like many premature infants, both of the twins needed respiratory support, including supplemental oxygen, noninvasive ventilation and even intubation. Though Julian began to improve, Gabby continued to struggle. She was intubated multiple times, and even with a feeding tube, her oxygen levels would dip dangerously low during feeds. After nearly 3 months in the NICU, the babies were finally discharged – Gabby with a NG (nasogastric) tube – and the twins’ parents, Chris and Courtney were able to take their babies home for the first time. Unfortunately, they would soon be back to the hospital.

When it became clear that Gabby was aspirating (taking food or liquid into the lungs) during feeds, Chris and Courtney turned to Children’s Hospital of Philadelphia (CHOP), where Gabby was admitted to the NICU with aspiration pneumonia. This admission was the first of many as Gabby suffered from repeated viral infections and bouts of pneumonia, each one sending Chris and Courney rushing to the E.R. “It was a very traumatic time,” says Chris.

When Gabby and Julian were 4.5 months, they were admitted to CHOP with a dangerous respiratory virus called RSV. On the twins’ second day of admission, Gabby’s breathing took a turn for the worst, and she was rushed to the Pediatric Intensive Care Unit (PICU), where she was ultimately diagnosed with a “trifecta” of respiratory viruses and required IV steroids to breathe. “We ended up on different sides of the hospital from one another,” remembers Courtney. “We would wave at each other through the glass.” 

The snowball effect

It wasn’t long after discharge that Gabby began to run recurrent fevers and struggle to breathe. When her home inhalers didn’t offer relief, Chris and Courtney would take their daughter back to the hospital, where she would receive more IV steroids. Though these steroids were essential to help her breathe, repeated treatments led to autoimmune neutropenia, a disorder that makes it harder for the body to fight off infections. Each new illness meant another trip to the E.R. and more steroids. “One thing kept snowballing into the next,” says Chris.

Finally, when Gabby was no longer testing positive for viruses or pneumonia but still struggled to breathe, the family was referred to CHOP’s Division of Pulmonary and Sleep Medicine. The twins were evaluated by Sharon McGrath-Morrow, MBA, MD, Associate Chief of the Division and leader of the Post-preemie Lung Disease Clinic, who immediately ordered a swallow study to check for anatomic abnormalities. She also recommended Gabby undergo a triple scope, a diagnostic procedure that allows doctors to view a child’s airways, throat and esophagus or stomach at the same time.

Testing eventually confirmed an abnormality of Gabby’s pyloric sphincter, which controls how food moves from the stomach into the small intestine. Once corrected, Gabby was able to return to tube feeds without aspiration.

Dr. McGrath also diagnosed Gabby with bronchopulmonary dysplasia (BPD) – also called chronic lung disease – a serious complication of prematurity resulting from poor lung growth and lung injury. For Gabby, this proper diagnosis changed everything about her care. “Dr. McGrath stopped the snowballs,” says Chris. 

A breath of relief

Until now, Gabby had only been receiving treatment when she was sick (acute). However, BPD is a chronic disease that requires daily, ongoing treatment to prevent severe illness. Between treatments for acute illnesses, Gabby was so exhausted by the effort of breathing, that she couldn’t feed properly, and would quickly get sick again.

Under Dr. McGrath’s care, however, Gabby began daily breathing treatments and chest physical therapy (a way to loosen and move mucus from the lungs). Speech therapy helped her tolerate feeds by mouth. “For the first time,” says Courtney, “Gabby started to get better.”

In addition to daily medication, Gabby was given a treatment regimen to use if she got sick. This helped ward off any emergency episodes, which meant no more IV steroids. Now 4, Gabby is down to one inhaler a day, has graduated to annual pulmonary checkups, and is expected to grow out of neutropenia.

Julian, who was also diagnosed with less severe BPD, only needs a daily inhaler. The twins are different in other ways, too – Gabby is a “spitfire” while Julian is empathetic and thoughtful. Still, they are very close and only comfortable if the other is nearby.  

“Dr. McGrath told me things were going to get easier,” says Courtney. “And I told her I didn’t believe her. But here we are. She fixed this, and we are so grateful.”