Q&A: Providing personalized care for premature infants with bronchopulmonary dysplasia

Caring for premature babies with bronchopulmonary dysplasia, which is a serious lung condition that occurs in babies born very premature, requires individualized treatment plans.

In order to provide specialized care for children with bronchopulmonary dysplasia (BPD), the Children’s Hospital Los Angeles (CHLA) launched the Infant Chronic Lung Disease Program. The program has adopted a multidisciplinary approach that incorporates several specialists such as neonatologists, pulmonologists and cardiologists in order to efficiently treat children with this chronic lung disease.

Bridget DiPrisco

Healio spoke with co-directors of the program, Bridget DiPrisco, MD, neonatologist, and Manvi Bansal, MD, pulmonologist and director of the Flexible Bronchoscopy program/HMVMAP program, about BPD, services offered within the program and their goals as co-directors.

Healio: How prevalent is BPD?

DiPrisco: The prevalence of BPD, which is a chronic lung disease of preterm infants, is inversely related to gestational age at birth, with the highest incidence of BPD seen in the most premature infants. For extremely preterm infants (born < 28 weeks of gestational age) the prevalence is about 40%.

Bansal: Infants born less than 28 weeks of gestational age are more likely to get BPD. Prevalence of BPD ranges from study to study, and a literature review published in 2021 reports global incidence of 18% to 89% among extremely preterm infants. In the U.S., it impacts 50% of the infants born weighing less than 1,000 gm. Difference in incidence also stems from how BPD is defined, whether a child needs oxygen at 36 weeks of gestation or at least needs oxygen for 4 weeks of life or both, etc.

Healio: What are some challenges infants with BPD face, and how are you helping them overcome these challenges?

DiPrisco: Infants with BPD, particularly severe BPD, require respiratory support in order to breathe effectively and maintain appropriate oxygen and carbon dioxide levels in their bodies. This support can range from supplemental oxygen through the nose to mechanical ventilation via a breathing tube. Mechanical ventilation, which is a life-saving treatment for these infants, is in itself harsh and damaging to the fragile and underdeveloped lungs of a preterm infant. Having a breathing tube in place also increases inflammation and the risk for infection in these babies, which can cause significant setbacks in their lung development.

And it’s not just the lungs — every other organ system is also immature and fragile. For example, infants with BPD often require increased calories in order to grow, but their immature intestines may struggle to digest this higher calorie milk. They also benefit tremendously from appropriate neurodevelopmental stimulation, including physical and occupational therapy, but they may be too unstable and unable to breathe comfortably when participating in these therapies.

At CHLA, we focus on providing infants who have severe BPD with adequate respiratory support to allow for optimal growth and neurodevelopment while their lungs grow and develop. We aim to minimize ventilator days and remove breathing tubes as early as possible, but we also want to ensure that our infants are breathing comfortably enough to grow and interact with their environment in age-appropriate ways, which is imperative for their development.

As part of our Infant Chronic Lung Disease Program, we hold weekly multidisciplinary rounds to assess and discuss the infants in our Newborn and Infant Critical Care Unit with BPD. These weekly rounds ensure consistency in the care of these infants across weeks and months, and they give the various care providers an opportunity to discuss the infant as a whole and collaborate on treatment plans.

Bansal: Infants born prematurely have all organs born premature. In effort to breathe “optimally” they need oxygen or extra pressure either through a nasal canula or via ventilator. If I start from top down, their brains are still immature. They run the risk for bleeding in the brain, besides long-term effects of sedatives, decreased “positive” stimulation, coordination issues and immature control of breathing. Need for ongoing developmental assessment and early institution of therapies and being cognizant with multidisciplinary rounds help in decreasing these effects. Working with a high-risk infant clinic on an outpatient basis and early referral to a regional center for therapies helps following discharge, which we strive for in our care.

Additionally, use of a breathing tube in sicker children further bears increased risk for airway problems and ventilator-related lung effects. We are forcing premature lungs to breathe when they don’t even have a setup for breathing air. This leads to damage — inflammatory and reactive changes in lungs — which in addition is also affected by infection and inflammation sources elsewhere in the body. Our pulmonary team is frequently consulted, and we do weekly multidisciplinary rounds with the neonatology team, a dietitian, occupational therapist (OT), physical therapist (PT), respiratory therapist, bedside nurse, parents if present, BPD inpatient nurse and core BPD members from the neonatology and pulmonary teams.

We individualize care by getting sleep studies to assess the need for home oxygen or any significant apneas for each patient in detail. These infants are then passed on to the outpatient BPD team and followed in the BPD clinic where the same doctors who have seen them in-house follow them to maintain continuity of care.

Gut or intestines are premature so feeding intolerance affects them frequently. Additionally, intermittent decreases in oxygen affects all organs, including the gut. Sometimes coordination to suck and swallow appropriately is affected enough to increase the risk for aspiration in lungs and therefore need for alternate means for feeding. That leads to the need for feeding therapies and swallow evaluations while closely monitoring their lungs as we try to get them back on track with feeding normally. This is why we work closely with gastroenterology and an OT for swallowing in the outpatient BPD clinic after discharge to help them recover and keep an optimal feeding plan while preventing any aspiration risk.

These issues also trickle down into a problem of weight gain, both when an infant is admitted to the newborn and infant critical care unit (NICCU) and discharged. Optimal weight gain is important as it correlates directly with lung growth. Hence, we have a dietitian working closely with them, both during inpatient and outpatient care.

Some of these young patients have issues with pulmonary hypertension, which is increased blood pressure in the blood vessels of the lung, and this increases the work of the heart as well. As lungs are less well developed, the blood vessels associated with them are also less developed. However, the amount of blood rushing through is the same, so these pulmonary or lung blood vessels deal with increased workload and, combined with lung disease, leading to the problem of pulmonary hypertension in some of these infants more than others for reasons we don’t entirely understand. Hence, working closely with dedicated cardiologists plays a big role. Jacqueline Szmuszkovicz, MD, from cardiology helps formulate plans for these infants — both inpatient and outpatient — along with their primary team as needed.

Healio: What inspired the launching of the Infant Chronic Lung Disease Program at CHLA? What programs and services does it provide for the infant and their families?

DiPrisco: There have been several recent studies published that show that multidisciplinary care and the implementation of comprehensive BPD programs improve outcomes for infants with BPD. At CHLA we have been using a multidisciplinary approach in our care of infants with BPD for years. We decided to launch the Infant Chronic Lung Disease Program to standardize our approach in caring for these infants. The goal of our program is to provide comprehensive multidisciplinary care that supports the growth and development of infants with BPD and improves their lifelong outcomes.

The Infant Chronic Lung Disease Program at CHLA consists of a team of experts that includes neonatologists, pulmonologists, cardiologists, gastroenterologists (GI), otolaryngologists, advance practice providers, nurses and nurse care managers, respiratory care practitioners, physical and occupational therapists, child life specialists, dietitians, pharmacists, social workers and clinical care coordinators.

When an infant is referred to our program, we review his or her medical history and perform a thorough diagnostic evaluation to create a personalized treatment plan tailored specifically to that infant’s needs. We also assess for other conditions that may be contributing to the infant’s lung disease, including pulmonary hypertension, reflux and aspiration. We hold weekly multidisciplinary BPD rounds in the NICCU, during which we gather input from the various care providers on the infant’s progress and discuss next steps in his or her care. A major focus of our program is the transition of these infants out of the NICCU and to home once they are ready. We have a large home mechanical ventilation program for infants who require ongoing support with a ventilator, and we work closely with families and the pulmonary team to ensure that every infant who leaves the NICCU has a close follow-up plan with ongoing support and care as they continue to grow and develop.

Bansal: Our hospital has been caring for these infants for many decades now. We already were collaborating with the NICCU team with focused pulmonologist rounding in the NICCU. We were looking to optimize this collaboration further by extending to incorporate OT, PT and GI services as we were looking to develop more cohesive care. We are happy that it has now materialized. This also included improved communication with inpatient and outpatient teams to optimize care. In addition, we know there is variability in care of these patients with regard to medications, oxygen, etc, so to make sure we have optimal care given by dedicated providers, we wanted to have this collaboration taken to the next level.

In outpatient services prior to the program, we would have patients seen by a medical doctor, nurse care manager and social worker and, based on insurance, a dietitian. Now we want to have most of these patients get these services and include OT and GI services in our dedicated BPD clinic. This also helps bridge gaps in care and provides avenues for research while providing more optimal care to these patients.

Healio: What does long-term care look like for this patient population? How does care continue as the patient gets older?

Bansal: As the children grow older, they are seen in the BPD clinic closely until they are off all respiratory support and are seen in regular pulmonary clinic with a medical doctor. They get breathing tests or pulmonary function tests once they are older, about 6 to 8 years of age based on their ability to the test to assess their lungs. Some children have asthma-like symptoms and are treated according to asthma as they grow older. Usually, most issues resolve or lessen in intensity as they get older with respect to other systems. Care by individual providers based on their symptoms and requirements gets spaced out as much as yearly, to 2-year visits, and sometimes to as-needed.

Healio: As co-directors of the Infant Chronic Lung Disease Program, how do you hope to advance the program?

DiPrisco: Dr. Bansal and I are very excited about the launch of the Infant Chronic Lung Disease Program and, as co-directors, we look forward to expanding the program. We are hiring additional providers to increase the developmental support for these infants and are developing tools to provide ongoing education to both the staff and families. We are also committed to advancing the program through our research efforts.

Bansal: As co-directors of the program, we strive to improve communication and care given to these children from inpatient to outpatient. We joined a multicenter collaboration, known as the BPD Collaborative, a couple years ago to further the cause of improving and giving more evidence-based high-quality care focused on a multidisciplinary approach and further research to improve long-term outcomes for these patients.

For more information:

Manvi Bansal, MD, can be reached at mbansal@chla.usc.edu.

Bridget DiPrisco, MD, can be reached at bdiprisco@chla.usc.edu.

References:

• Going beyond lung cancer for babies with bronchopulmonary dysplasia. https://www.chla.org/blog/physicians-and-clinicians/going-beyond-lung-care-babies-bronchopulmonary-dysplasia. Published Oct. 11, 2022. Accessed Nov. 14, 2022.
• Siffel C, et al. J Matern Fetal Neonatal Med. 2019;doi:10.1080/14767058.2019.1646240.
• Jensen EA, et al. Birth Defects Res A Clin Mol Teratol. 2014;doi:10.1002/bdra.23235.