Post-preemie Lung Disease Clinic
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Babies born early haven't had time to fully grow their lungs. This puts them at risk for infant chronic lung disease, which is also called bronchopulmonary dysplasia (BPD).
Even after these babies’ lungs have matured enough so they can leave the hospital and go home, they still need close follow-up care. As many as 40% of babies with chronic lung disease still show symptoms in childhood, and up to 25% have symptoms as adults.
The Post-preemie Lung Disease Clinic provides specialized care as preemies become toddlers and beyond. The goal is to keep these children on a path that maximizes their lung function and health.
How we serve you
For some babies, the effects of infant chronic lung disease can last well beyond when they are infants. With close follow-up from the experts at the Post-preemie Lung Disease Clinic, your baby will get the care necessary to continue to improve and to avoid getting severely sick when faced with common respiratory viruses.
How often your child needs to come to the clinic will be determined by their age and whether they are on oxygen. Each child will be on a different schedule to meet their specific needs. Some follow-up visits may be conducted via telehealth, if appropriate.
Family members' involvement in their child's care is critical to ensuring the best outcomes. Our doctors and nurses work closely with families to help them confidently care for their child as the child moves through the stages of lung development. Clinic staff rely on parents and caregivers to tell us about symptoms, monitor the use of supplemental oxygen and give medicines. For children who are on supplemental oxygen, we work toward weaning them off, so they are better able to engage in typical childhood activities.
Who we treat
Any child who had chronic lung disease as a premature infant and who still has off-and-on or chronic problems breathing is welcome at this special clinic. Most of our patients fall into these groups:
- Children who still require supplemental oxygen by a nasal cannula after they leave the hospital and need assistance with weaning off oxygen as they progress.
- Children who are on respiratory medications, such as diuretics or steroids to help with lung development, or medicines, such as albuterol to help with symptom relief. Knowing when it is time to switch medications, adjust doses or stop medicines altogether is a key part of your child's care.
- Children with chronic respiratory symptoms, such as rapid breathing, coughing, chest congestion, wheezing and shortness of breath. They may have symptoms only sometimes, for example, when they have a cold or are exposed to triggers, such as cold air, cigarette smoke or indoor air allergens.
- Former preemies who are doing well but encounter environmental “insults” — such as cat, dog, cockroach or mouse allergens, and indoor and outdoor air pollution — that can trigger respiratory symptoms.
- Children who start off doing well, but then begin having problems later on. These children may end up being misdiagnosed with asthma or other ailments when the root of their problem is premature lungs. Although preemies may have a component of asthma, when they are older, they are sometimes prescribed medications that will not help their specific condition.
- Children who spent time in a NICU outside of Children’s Hospital of Philadelphia (CHOP) are welcome in the clinic.
Our team
The clinic is staffed by pediatric pulmonologist Sharon McGrath-Marrow, MD, MBA, who has 28 years of experience caring for post-preemie children with lung disease, a nurse practitioner, respiratory therapist and a registered dietitian.
Resources
- Caring for Your Child: handbook for school-age and adolescent children living with chronic lung disease related to prematurity
- El Cuidado De Su Hijo: Manual para niños en edad escolar y adolescentes que viven con una enfermedad pulmonar crónica debido a prematuridad
- Chronic Lung Disease of Prematurity
- Enfermedad Pulmonar Cronica del Prematuro