Post-preemie Lung Disease Clinic
Premature babies are often born with underdeveloped lungs and therefore are at greater risk for infant chronic lung disease, which is also called bronchopulmonary dysplasia (BPD).
Even after these babies’ lungs have matured to where they can leave the NICU and go home, they still require attentive follow-up care. As their lungs continue to grow and heal, they are especially vulnerable for the first two to three years of life.
Studies indicate that 40% of babies with infant chronic lung disease continue to show symptoms of lung disease in childhood. Sometimes these children will have wheezing and coughing with respiratory viruses and shortness of breath with exercise. Up to 25% of these children have symptoms into adulthood.
That is why CHOP launched the Post-preemie Lung Disease Clinic as a central place to follow premature infants as they become toddlers and beyond. The goal is to keep these children on a trajectory that will maximize their lung function and health while minimizing comorbidities.
Who we treat
Any child who had chronic lung disease as a premature infant and who still has intermittent or chronic respiratory problems is a candidate for this specialized care.
- Some may still require supplemental oxygen by a nasal cannula after they leave the hospital and need assistance with weaning off oxygen as they progress.
- Some may be 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 appropriate to switch medications, adjust dosages or stop medication altogether is a key component of the clinic.
- Other children may have chronic respiratory symptoms, such as rapid breathing, coughing, chest congestion, wheezing and shortness of breath, or intermittent symptoms, for example when they have a cold or are exposed to environmental triggers, such as cold air, cigarette smoke or indoor air allergens.
- Former preemies who are doing well may encounter environmental “insults” — such as cat, dog, cockroach or mouse allergens, indoor and outdoor air pollution — that can trigger respiratory symptoms.
- Children who initially do well, but begin to have problems later on may end up being misdiagnosed with asthma or other aliment when the root of their problem is premature lungs. Although children born premature may have a component of asthma, 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 are welcome in the clinic.
Some follow-up visits may be conducted via telehealth, if appropriate.
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.
Each child’s path to optimum lung function is different, and the current state of their lung disease and treatments will determine how frequently they should visit the Post-preemie Lung Disease Clinic.
- Children on supplemental oxygen may require visits up to every four to six weeks initially, then less frequently as they are weaned.
- Children stable on respiratory medications will usually be seen three or four times a year.
- Children successfully weaned from oxygen and/or medication will usually have annual visits for pulmonary function tests to gauge progress and watch for problems that may resurface. For example, this population has a higher risk of developing obstructive sleep apnea from high arch palates due to their prematurity. As tonsils and adenoids enlarge during the preschool years, obstructive sleep apnea may develop.
Clinicians in the clinic understand the value of working closely with families as their children move toward achieving the best outcomes. Parents and guardians are integral to treatment as they observe symptoms, monitor use of supplemental oxygen and deliver medication.
The clinic team will equip the family to confidently care for their child as the child moves through the stages of lung development.
Physicians will work with families to set up a weaning schedule that works in the home for children on supplemental oxygen. This will allow children to gradually become less dependent on oxygen and better able to engage in typical childhood activities.
To learn more or to make an appointment, call 215-590-3749.
- 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