Children with Lung Disease at Children's Hospital

Led by Julian Allen, MD, the Division of Pulmonary Medicine at CHOP includes more than 45 doctors (pediatric pulmonologists), nurses, nutritionists, social workers and psychologists. The team treats children with asthma, cystic fibrosis, primary ciliary dyskinesia, interstitial lung disease, diffuse lung disease, complications from prematurity, and other conditions. Many of the children in their care require long-term, complex treatment. Some require lung transplant.

In this video, patients and parents talk about the quality of care they receive and their close bond with the pulmonary medicine team.

Transcript

Children with Lung Disease at Children's Hospital

Mother of Adrian: I have a son Adrian who’s 2 years old. Adrian was born three months early. He was diagnosed with chronic lung disease.

Mother of Jason: Cystic fibrosis, it’s asthma on steroids. The limitation basically is the breathing and walking up steps and doing a lot of running around.

Mother of Ireland: Ireland developed something called Symptomatic Chiari which was too much pressure in her brain. It caused breathing problems.

Kaylee: When you have asthma, like sometimes you run and then, you’re like out of breath. You’re so tired and you want to go home and you don’t want to start running again.

Mother of Damir: He had chronic lung disease, as well as Epstein-Barr.

Grandmother of Damir: I almost lost my faith over Damir because I said that he’ll never make it. But, CHOP took us under their wing and they trained us.

Sofia: The doctors diagnosed us with interstitial lung disease. It’s a lung disease that causes us to get tired. I had a double lung transplant, it saved my life on March 27.

Stefanie: After my sister had the surgery, the doctors decided to put me on a lung transplant list and now I’m waiting for the call to get my new lungs.

Sofia: I understand what she’s going through. So it’s easy for me to help her.

Mother of Jason: And I also have cystic fibrosis, so I understand what he goes through and I definitely understand you know everything that it takes to stay healthy. The doctor I wanted him to see was Dr. Howard Panitch, and that was my doctor, and I knew that was where I wanted him to go.

What made me comfortable about bringing Jason to Dr. Panitch was the care that I received. He went over and beyond so, I know that he would do the same for my son. The team is very welcoming. This is like a second home.

Mother of Adrian: They actually helped assist us in transporting Adrian from New York to Philadelphia. He’s here, he’s running, he seems like a normal baby. From where he’s coming from, you would never really think that something was wrong with him. CHOP is a part of me, a part of our family.

I love the pulmonary team. I call them all the time.

Mother of Ireland: You really get to know the families. There’s just some kind of a connection here that makes you feel really comfortable and really safe and you know that you’re in the right hands.

Mother of Kaylee: They know her whole history, you know, from the beginning of when she was a baby up to now. You know they know more of how to help her and how to get her to a better place.

Sofia: It’s home, basically.

Grandmother of Damir: As soon as we walked through the door, they welcomed us with open arms and started working with Damir.

Mother of Damir: With the progress they could see to them, breathing on his own, sleeping on a BiPAP machine.

Grandmother of Damir: He’s a gift to us.

Mother of Adrian: I never thought that Adrian would be in a position where he is now. So, pretty much to me, to live a normal life.

Jason: I like to run outside with my friends or play basketball. I start hockey next year.

Mother of Ireland: She’s a very bright little girl. She loves her BiPAP machine. She sleeps with it 12 hours a night. Right?

Ireland: Thirteen.

Mother of Ireland: Thirteen.

Kaylee: I can do like soccer. I can run a lot. I feel like I can get to do more stuff and go new places.

Sofia: I can run and be active. Do gym and sports and all that.

Stefanie: After her transplant, when she gets it, we want to like play outside, run again, like we did when we were little. And just enjoy the things in life.

Topics Covered: Children’s Interstitial and Diffuse Lung Disease, Cystic Fibrosis , Asthma, Breathing Problems

Related Centers and Programs: Division of Pulmonary Medicine, Cystic Fibrosis Center, Children's Interstitial and Diffuse Lung Disease Center, Lung Transplant Program