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Arya’s Story: Overcoming Chronic Lung Disease

Arya’s Story: Overcoming Chronic Lung Disease

Arya’s Story: Overcoming Chronic Lung Disease

Arya smiling
Arya was born at just 24 weeks and had a long road in the NICU.

Sharifa Jackson is used to telling other people’s stories. 

As an Action News reporter in Philadelphia, her days are often fast-paced and unpredictable. But during her pregnancy, every checkup was normal, and there were no signs of concern.

“Everything had been perfect,” she says.

That’s why, on a hot August day while working in Camden, N.J., what happened next felt so unexpected. 

“I started to feel a little off,” Sharifa recalls.

At first, the symptoms didn’t seem alarming. She thought she might just be dehydrated. 

“I passed out,” she says. “When I came to, I was sweating, overheated and my stomach felt tight.” 

An ambulance was called, and Sharifa was taken to a nearby hospital in Camden. 

Even in the ambulance, she thought everything would be OK. 

“I was literally on the phone with my job telling them I was fine,” she says. “I talked to my husband and told him I was fine.” 

But once she arrived at the hospital, the situation changed quickly. 

“While they were measuring the baby’s heart rate … my water broke with blood everywhere.” 

Sharifa was experiencing a complete placental abruption, a life-threatening emergency. What had felt like mild discomfort was actually one continuous contraction. 

Her baby’s condition became critical. Sharifa was transferred by ambulance to Virtua Voorhees Hospital, a South Jersey regional perinatal center where neonatologists from Children’s Hospital of Philadelphia (CHOP) collaborate with Virtua providers to care for critically ill and premature newborns. There, she underwent an emergency C-section. 

Her daughter, Arya, was born at just 24 weeks — 16 weeks early — weighing just over one pound. 

Fighting to survive

When Sharifa first saw her daughter, the moment didn’t fully register. 

“I think I was still in shock,” she says. “I don’t think I had 100% processed what had happened.” 

She had no preparation for what life in a neonatal intensive care unit (NICU) would mean. 

“I didn’t know anything about the NICU or that a baby could survive weighing just one pound.” 

On her first day of life, Arya appeared stable. 

“She had her honeymoon phase, maybe for one day,” Sharifa says. “After that, she declined.” 

Arya’s lungs were extremely underdeveloped. Even with a ventilator, keeping her stable was difficult. 

Over the next several months at Virtua, Arya remained dependent on breathing support, spending four straight months on a ventilator. Her parents watched as she faced one challenge after another — from severe lung disease to multiple blood transfusions. 

Sharifa recalls one particularly difficult day when Arya had to be resuscitated three times. 

Still, even during the hardest stretches, there were moments that gave them hope. 

“It would be like two steps forward, one step back,” Sharifa says. “But I could see the progress forward.” 

Learning to be her mom

Arya is home
Now at home, Arya is growing stronger every day.

For weeks, Sharifa could not hold her daughter. 

About a month after Arya was born, that moment finally came. 

Arya was still incredibly fragile, connected to tubes and a specialized ventilator that helped keep her lungs working. 

“I was happy, but I was petrified at the same time because she was so fragile,” Sharifa says. 

Still, the care team encouraged those early moments of bonding. 

Even simple interactions — touching Arya or helping with care — felt overwhelming at first. But nurses and staff guided Sharifa and her husband every step of the way. 

Slowly, those moments helped Sharifa feel more confident caring for her daughter. 

A turning point at CHOP

After about three months, Arya’s care became even more complex when doctors identified a growing concern with her heart. 

Arya had a patent ductus arteriosus (PDA), a condition in which a blood vessel near the heart that normally closes after birth remains open. Early on, doctors saw signs that the opening might close on its own — a common outcome for many premature babies. But instead of closing, the vessel became larger, making it harder for Arya's heart and lungs to work properly. 

She needed surgery. 

Arya was transferred to Children’s Hospital of Philadelphia (CHOP), where the initial plan was for her to undergo the procedure and then return to Virtua. 

But once the CHOP team evaluated Arya, it became clear she needed far more than a single procedure. 

Arya had developed severe chronic lung disease and required highly specialized ongoing care. 

She was admitted to CHOP’s Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU) and enrolled in the hospital’s Newborn and Infant Chronic Lung Disease Program, where experts focus on helping medically complex babies grow stronger over time. 

For Sharifa and her family, the move also meant being closer to home in Roxborough, Pa. CHOP is just 15 minutes away. But even more important was knowing Arya was now in the hands of a team experienced in treating complex lung disease. 

That confidence quickly deepened as they saw Arya’s care firsthand. Sharifa watched teams collaborate closely, individualize care plans and remain deeply invested in Arya’s progress. 

“I say it all the time … we’re so blessed and grateful to have CHOP in our backyard,” she says. “I never worried when I had to leave.” 

More than medical care

Throughout Arya’s time at CHOP, the support extended far beyond medical treatment. Nurses coached Sharifa and her husband through hands-on care, helping them build confidence step by step. 

“When things were going bad, they would sit in the room and just talk with us,” Sharifa says. 

One experience especially stood out. During a particularly difficult period, when Arya’s condition began to decline, a nurse stayed hours past the end of a long shift to help stabilize her and support the family. 

“That meant everything to us,” Sharifa says. 

Technology also helped the family stay connected. Through CHOP’s Angel Eye camera system, parents and loved ones could securely check in on Arya remotely at any time. 

“I watched it all the time,” Sharifa says. “My husband’s parents live in Europe and they could watch it, too.” 

Milestones that changed everything

After months of specialized care, Arya began reaching important milestones. 

One of the biggest was coming off the breathing tube. 

From there, she gradually progressed to less intensive breathing support. 

Then came feeding — another major milestone on the path home. Babies born this early often need weeks or months to learn how to feed on their own. 

“It took her five days,” Sharifa says. 

As Arya improved, she transitioned to the N/IICU at CHOP’s Middleman Family Pavilion in King of Prussia to continue focusing on feeding and growing. It was another sign of progress and an important milestone in her recovery journey.  

Bringing Arya home

Arya in a stroller with sunglasses
Arya today: healthy, home and reaching new milestones.

After 236 days — just shy of eight months in neonatal intensive care — Arya was finally ready to go home. The moment felt both exciting and overwhelming. 

“We were used to the nurses being the backup,” Sharifa says. 

But the care team had prepared them well. 

“We learned everything,” she says. 

Arya was able to go home without needing long-term breathing support such as a portable ventilator — something that can be difficult for babies with severe chronic lung disease. 

“That’s a testament to her being at CHOP,” Sharifa says. “Our baby was in the hands of the absolute best people she could be.” 

Now at home with her family, Arya is thriving and growing stronger every day. She continues to be closely followed by CHOP specialists, with regular visits to monitor her lungs, heart and development as she grows.

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