Yaseen’s Chronic Lung Disease Story

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Yaseen suffered from chronic lung disease for months with no improvement. The physicians caring for him at the hospital near his family’s home in Virginia worried he wouldn’t survive. Wanting desperately to save their child, Courtney and Khaled made the difficult decision to have their son transferred to Children’s Hospital of Philadelphia in the midst of a global pandemic. It was a lifesaving move.

Courtney and Khaled were excited to learn they were having twins: a girl and a boy. Unfortunately, the pregnancy had complications early on. Courtney suffered from an incompetent cervix, putting her at risk for premature labor and possibly even loss of the pregnancy. At 19 weeks, she had to be admitted to the hospital near her home in Virginia and kept on bed rest. At 23 weeks, one of the amniotic sacs ruptured. A week later, Courtney began having contractions and had to deliver both babies.

In the delivery room, the boy twin, Yaseen, was quickly intubated and whisked off to the neonatal intensive care unit. The other twin had a tougher time. She had to be resuscitated, and it took 30 minutes to intubate her. Sadly, she passed away two days after she was born.

Intensive care in the time of COVID

Yaseen’s lungs were severely underdeveloped. He needed ventilator support to breathe and developed chronic lung disease (CLD). He was in the NICU from his birth in mid-December through March without any improvement in his health. Courtney and Khaled felt helpless as they watched their son struggle day after day.

Then, they saw a story online about Josephine, a baby whose experience after birth had been much like Yaseen’s. Josephine was born prematurely at a hospital in Virginia, needed a ventilator to breathe, developed CLD, and spent months in the NICU with no improvement. It was only when she was transferred to Children’s Hospital of Philadelphia (CHOP) that she began to improve and was eventually able to go home.

Yaseen on a colorful playmat Courtney and Khaled talked to Yaseen’s physicians about transferring him to CHOP, which has a specialized Newborn and Infant Chronic Lung Disease (NeoCLD) Program. The physicians reached out to CHOP’s NeoCLD Program and the two teams began working together to have Yaseen transferred to CHOP. Then, the COVID-19 pandemic hit.

It was scary to know their child needed lifesaving care during a worldwide pandemic, says Courtney. But while many aspects of everyday life were able to be put on hold during that time, the care sick babies like Yaseen need can’t wait. He was transferred by medical airplane to CHOP.

Seeing the safety protocols the hospital had in place to keep babies, parents and staff safe reassured Courtney and Khaled.

“It made us feel good that they weren’t taking any risks,” says Courtney.

The couple was also reassured by the care the NeoCLD team provided.

The care at CHOP was amazing,” says Courtney. “The doctors immediately started adjusting Yaseen’s vent settings. Though it took six weeks to figure out his baseline, they truly saved his life! I don’t think he would’ve survived if we didn’t come to CHOP.

The NeoCLD Program tailors treatment to each child using its trademark interdisciplinary approach and the team’s deep understanding of the best approaches to treat babies with CLD.

“The doctors were experienced,” says Courtney. “You felt the difference and could tell they deal with this a lot.”

Yaseen and mom Yaseen received a gastrostomy tube (G-tube), which allowed him to receive food directly into his stomach, to improve his weight gain and reduce chronic respiratory symptoms related to feeding difficulties. The team also put a tracheostomy tube in Yaseen’s windpipe to allow him to be supported safely with a portable home ventilator outside of the intensive care unit. The trach made it easier for his parents to hold and bond with him.

After three months in CHOP’s Newborn/Infant Intensive Care Unit (N/IICU), Yaseen’s lungs were strong enough for him to return to his home hospital in Virginia. He spent a few weeks in pediatric intensive care, and then was finally able to go home.

Enjoying the ups and downs of life at home

Life at home has been great, says Courtney. Other than having the G-tube and trach and being on a home ventilator, Yaseen, now 7 months old, “is just like a normal baby. He smiles and wants to be held.”

The family relies on nursing support overnight so Courtney and Khaled can get a good night’s sleep, but thanks to the training of the CHOP N/IICU nurses, they have the skills and confidence to care for any medical issues that come up.

“The first week we were home, his trach popped out and I went into ‘CHOP mode,’” says Courtney. “I knew just what to do … it was like a reflex. CHOP’s training was like no other. They went above and beyond.”

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