As a parent, it can be overwhelming if your child is diagnosed with chronic lung disease. That is why an experienced pediatric team can help address parents’ concerns while providing the best care for the child. Michael O’Brien is a Registered Respiratory Therapist (RRT) who has spent the past six years working in pediatrics at UVA Health Children’s Hospital. “I was drawn to pediatrics because the field requires a certain kind of work ethic and compassion from the healthcare provider,” Michael said. “As I began working, the biggest challenge was learning the variety of childhood diseases and their different presentations across childhood. But learning how to treat pediatrics accelerated my learning of respiratory medicine.”

Michael’s specialization in chronic respiratory failure makes him uniquely aware of all the questions and concerns that come along with managing a childhood lung disease. “Children are always trying to tell you what ails them, they simply don’t have the words to do so. So you listen to the narrative that the caregivers and child’s body are trying to tell you,” he explained. He sat down to share some knowledge about pediatric lung diseases with us.

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What are the most common lung diseases you encounter at the children’s hospital? 

“Currently, I specialize in managing children with chronic respiratory failure who require technology for ventilation support. Most typically, this is mechanical ventilation through a tracheostomy tube,” said Michael. This is a common treatment for children who developed bronchopulmonary dysplasia (BPD), a form of chronic lung disease that affects premature newborns who required oxygen therapy at birth. In BPD, the lungs and the airways are damaged, causing tissue destruction in the alveoli of the lungs. An estimated 10,000 to 15,000 newborns develop BPD in the United States every year. 

Other pediatric lung diseases that Michael frequently treats are cystic fibrosis, primary ciliary dyskinesia, asthma, lower respiratory infections, and pediatric acute lung injury. With the exception of cystic fibrosis, which is genetic, most newborns are not born with pediatric lung disease. However, disease can result from treatment after being born too prematurely, unusually severe respiratory illnesses, and exposure to harmful irritants or injury. 

“Some children suffer from abnormalities of the nose, jaw, or trachea that prevent consistent and sufficient air flow for breathing, so a tracheostomy tube may be helpful,” Michael explained. In other instances, a tracheostomy tube delivers support from a ventilator. The ventilator provides support for inhalation and breathing regularly. “In these cases, the ventilator removes the work required to breathe, which allows a child’s body to conserve energy for growing and developing.” 

What symptoms should parents watch for in their baby?

The symptoms of pediatric lung disease vary depending on severity. But commonly, newborns will experience rapid or labored breathing, wheezing, difficulty feeding and repeat lung infections or complications. “I suggest parents seek help when their child appears more distressed than expected, if an illness is lasting longer than expected, or if the child seems to become sick very frequently,” Michael said. 

Since these patients are so young, diagnosis is based on the clinical evaluation, the degree of prematurity, and the need for oxygen after a certain age. “We normally diagnose a patient with a chronic lung disease when we determine that a child consistently needs extra oxygen to satisfactorily saturate their red blood cells with oxygen, or if the child requires assistance from technology to sustain their work of breathing.” Children who are unable to breathe without the assistance of a ventilator will receive a home version of the ventilator and a tracheostomy tube.

How is a pediatric lung disease managed or treated?

Managing pediatric chronic lung disease is something that can affect a child for the entirety of their life. So, it makes sense that parents are not only concerned about how something will affect their child in their moment, but also in the future. “Every parent wants what is best for their child and if a disease could be an obstacle to the child, parents want to know how big an obstacle it will be and which strategies will moderate its effect,” Michael explained.  

“If disease is a synonym for obstacle, every parent wants to know about possible cures. As such, I understand my role as a healthcare provider as coaching parents to learn management strategies that achieve the child’s health goals and the parents’ vision of family life,” he continued. Michael is quick to explain that this is not to say that managing the disease will always be hard, but he emphasizes that caregivers and the child's medical team need to work together closely to set healthcare goals and find the best strategies to achieve them.

Advancements in medicine have meant that over the last few years, children have been able to be discharged with the use of a home mechanical ventilation. But this presents its own set of challenges as parents need to be trained in how to use the ventilators or a home nurse is needed. “Primarily, parents will require training from a health team to teach them routine care and emergency responses for managing their child's respiratory equipment. Second, the family needs access to a team of medical specialists who can manage the child's needs. Third, they need home nursing to aid with daily care of the child and to provide respite for the caregivers. Finally, love and support from friends and family for the caregivers themselves,” said Michael. 

Michael’s words of wisdom

Finding out your child is chronically sick can be overwhelming, but your team of healthcare providers are here to support you. “It is never the expectation that parents know everything about their child’s condition; that’s what the interdisciplinary medical team is there for. They’ll manage the many small details so that the parents can fulfill their most important roles: being mom and dad.”

For more information about pediatric lung diseases, visit our website or contact the Helpline.

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