Chronic Lung Disease: Ethan’s Story

Ethan was born in Central New Jersey at 24 weeks, weighing 1 pound, 11 ounces. The local hospital kept him alive, “but after six months, he wasn’t getting any better,” Kristen says. “They see maybe one baby a year like him. They didn’t really know what to do.”

Once Ethan was airlifted to CHOP and was under the care of its Newborn and Infant Chronic Lung Disease Program team, everything changed.

Coordinated team effort

“It was a real coordinated effort with everybody on Ethan’s care team bringing up suggestions and ideas,” Kristen says. “Because they had seen so many other preemies with BPD (bronchopulmonary dysplasia), they knew how to help him.”

And they knew how to help her and her husband, Rushil. The CHOP team involved them every step of the way. When the care team made its daily rounds to see how Ethan was progressing, they wanted Kristen and Rushil there. The team sought their input and answered any questions. “Since I was in the hospital every day, I really appreciated that,” Kristen says.

The Newborn and Infant Chronic Lung Disease Program features neonatologists, pulmonologists, otolaryngologists and cardiologists, plus physical, occupational, speech and respiratory therapists, nutritionists, and specially trained nurses. Together, they create a unique plan of care for each patient, responding to each baby’s needs.

Another huge help was developmental psychologist Casey Hoffman-Craven, PhD, who in addition to evaluating Ethan also worked with families on the Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit. “She organized activities for all the parents on the unit,” Kristen says. “We did scrapbooking and created memories that acknowledged our children’s milestones.”

Ethan’s physical therapist made an impression, too. The PT with Ethan was important, but what is etched in Kristen’s mind is the life lesson from an article the therapist gave her to read. “It was all about understanding that every child has a unique developmental path, and it’s best not to compare your child to another child,” Kristen says. “I learned to measure Ethan’s progress against where he had been, so I saw progress. I focused on comparing where he was last month to where was this month. I can’t remember what I had for dinner last night, but I have kept that lesson in the forefront of my mind.”

Home at 9 months old

Ethan had made enough progress that he could finally go home at 9 months old. He had a tracheostomy and ventilator to breathe for his still-developing lungs and a feeding tube. Even thought they had home nursing care, Kristen and Rushil underwent training to ensure they were comfortable with every aspect of Ethan’s care, such as changing his tracheostomy tube and knowing how to react to alarms on his ventilator. “I took apart the ventilator and put it back together again to give me peace of mind,” Rushil says.

By the time Ethan turned 2, he was off the ventilator and feeding tube. The trach came out before he celebrated his third birthday. About a year later, otolaryngologist Karen Zur, MD, closed the stoma (opening) in his neck. “And he’s never looked back,” Kristen says.

Through it all, Ethan has been followed by the Division of Pulmonary and Sleep Medicine. Pulmonology nurse practitioner Eileen Hickey, RN, CRNP, was an important part of his care from the earliest days until she retired recently. Stamatia Alexiou, MD, is his current pulmonologist. Ethan uses a daily inhaler to keep his lung function optimal and has a care plan to manage any flares.

“The level of support we get from CHOP is outstanding,” Kristen says. “I’ve called at 3 a.m. and was able to talk to a doctor. The whole team is amazing.”

Sassy and caring

Now 14, Ethan is in eighth grade and doesn’t let his lingering health issues — mild cerebral palsy and reactive airway disease — hold him back. He’s involved in adaptive rock climbing and horseback riding. He’s a hard-working, conscientious student whom all his teachers love.

Just as important, “He’s very caring,” his mom says. “He’s in tune to other people, and while he’s definitely a sassy teenager, he extends himself to be kind to others. A lot of people have learned a lot from his resilient spirit.”

In addition to physicians and therapists, the family was surrounded by special nurses, an “amazing” social worker and a comforting music therapist. “The truth is, there were so many people who gave us such great support,” Kristen says. “At every turn, someone was there to help us through it. It can be a harrowing journey, and people at CHOP get that. They understand that it’s important to provide services for the whole family.”

When she is asked, Kristen is happy to speak to other families that are just beginning the journey of parenting a child with chronic lung disease. “I tell them that they will get to the other side of the hard times,” she says. “It’s hard to see that when you’re in the midst of it. I share hope with them. It will get better.”

A gift to help other families

It was that circle of care, starting during Ethan’s months in the N/IICU and continuing through today, that prompted the family to donate to the Division of Pulmonary and Sleep Medicine. Their generous gift was used to purchase infant scales. These scales will be donated to families, allowing them to accurately weigh their infants at home. 

“Medically fragile babies need to be weighed frequently, and when families have scales at home, they don’t have to come in for weight checks as often,” Kristen says. “We were in that situation, so we understood how this would be helpful for families, especially in the pandemic.”

Rushil adds, “After all the CHOP has done for us, we were happy to be able to pay it forward.”