The Conversations We’re Not Having: Lessons from COVID-19’s Impact on Children from Sandra L. Fenwick
By Radhika Tampi
Much of the recent conversation surrounding children and COVID-19 has focused on school reopenings and whether children are responsible for transmitting SARS-CoV-2 to adults. But why have the media considered them only as vectors of disease? What about the effects of COVID-19 on children themselves? Speaking to the myriad health, economic, and social consequences of coronavirus on children and their families, Sandra L. Fenwick, CEO of Boston Children’s Hospital, shared her insight with the Voices in Leadership program on Tuesday, September 29, 2020.
Boston Children’s Hospital is ranked the number one pediatric hospital in the United States and is the leading recipient of pediatric research funding from the National Institutes for Health. As one of only 30 freestanding children’s hospitals in the country, it plays an outsized role in setting standards for pediatric care throughout the U.S. Decisions made by the hospital’s leadership could provide useful examples for other hospitals around the preparedness measures and innovative thought processes required to stay afloat and support local communities through future crises.
CEO Fenwick has been a leader at Boston Children’s Hospital since 1999, helping guide the institution through technological innovations while cutting costs and providing high-value care. She is especially committed to the expansion of regional clinical networks within the greater Boston metro area to improve access to care, as well as initiating partnerships with community care organizations to address health inequities stemming from systemic racism and classism. She has also been a champion of directing the national dialogue to recommit to investing in children, as federal and state governments have threatened to cut funding for children’s healthcare. As the U.S. continues to reel from the federal government’s negligence in handling the pandemic, Fenwick discusses the effects of COVID-19 on children — particularly those from historically and currently oppressed communities.
As of September 24th, nearly 625,000 children have been diagnosed with COVID-19, comprising 10.5% of all cases in the U.S. In a group of 25 states and New York City reporting COVID-19 related hospitalizations, 8 in 100,000 children with COVID-19 were hospitalized, compared to 165 per 100,000 adults hospitalized due to COVID-19. However, every 1 out of 3 children hospitalized with COVID-19 ends up in the intensive care unit (ICU) — the same rate seen in adults.
In her interview with Dr. Robert J. Blendon, Richard L. Menschel Professor of Health Policy and Political Analysis, Emeritus at the Harvard T.H. Chan School of Public Health, CEO Fenwick expounded upon the challenges of leading a world-class pediatric hospital through a pandemic, especially one in which the disease’s effect on children has been minimized and distorted by national leadership and the media.
The Pandemic’s Effect on Children
COVID-19 disproportionately affects people from historically and currently oppressed communities. Less often discussed is whether this effect is seen across all age groups. For example, COVID-19-associated hospitalization rates are 5 to 8 times higher in Black and Latinx children, respectively, compared to white children. In addition to the more familiar presentations of COVID-19, including cough, fever, and fatigue, some patients are also afflicted with multi-system inflammatory syndrome in children (MIS-C), a rare but serious complication of the SARS-CoV-2 virus.
In addition to the direct attribution of COVID-19 to morbidity and mortality, children also feel the indirect effects of the pandemic and social distancing measures. CEO Fenwick highlighted the overall decreased frequency of care for children due to COVID-19, including lower levels of routine childhood vaccinations, well-child screenings, and management of chronic conditions, due to protocols and parents’ fears of exposing themselves and their young ones. CEO Fenwick additionally emphasized the impact of interruptions to social service programs on children who are impacted by food and housing inequities, as well as the continued effects of social distancing and school closures on children’s cognitive and behavioral development.
Preparation for and Response to the Pandemic
Though Boston has been greatly impacted by COVID-19, Bostonians were uniquely prepared to face this challenge. Greater Boston has an extraordinarily high density of healthcare providers, facilities, and resources in proportion to its population (although whether healthcare provider density and population health outcomes are directly related is a subject of debate). In addition to being a national leader in pediatric care, Boston Children’s Hospital runs a huge research operation and constantly pushes the boundaries in new techniques taught to staff, which proved to be critical in responding quickly and decisively when signs of community transmission of SARS-CoV-2 appeared in Boston. The hospital’s primary concern during this first stage was safety, as knowledge on the transmissibility of the virus was limited, and the lack of testing made it difficult to know who had been infected. CEO Fenwick shared:
“We had … first and foremost… to put safety in front of everything. So it became our north star. And we had to find ways to protect, not only our patients and families, but also our staff and our faculty.”
Luckily, Boston Children’s Hospital was designated as a special pathogen treatment center in 2015, and many staff members had prior experience in treating the H1N1 flu and preparing for the Ebola virus. As part of this designation, staff were regularly trained on proper use of personal protective equipment (PPE), which was critical for dealing with a novel virus with unknown transmission routes and allowed clinicians to quickly adapt in the midst of fear and uncertainty. The hospital’s leadership also advocated for setting up its own testing sites to prevent a backlog in results that would compound the challenge of keeping staff and patients safe and conserving PPE. CEO Fenwick pointed to the hospital’s focus on safety, as well as a strong supply chain and coordination among all the service providers at the hospital, as a few of the reasons for Boston Children’s Hospital’s success in making it through the surge.
Another way in which the hospital was uniquely prepared for this crisis was its investment in alternative clinical models. Two years ago, hospital researchers had set up a telemedicine training program for providers and because of this advance preparation, clinicians were able to scale remote visits from 25 patients per day pre-COVID-19 to nearly 2,000 per day within the first two weeks of the pandemic. Although many clinical services are adjusting back to a fully in-person or mix of remote and in-person care, CEO Fenwick believes that for those services that are still conducting 85–90% of their activities via telehealth, telemedicine may be here to stay. According to her, mental and behavioral health interventions have been both highly effective and removed many barriers to accessing care when delivered virtually, and thus these programs may remain permanent parts of the caregiving model at Boston Children’s Hospital. However, CEO Fenwick shared that she does not know if they will be utilized at such a high percentage post-pandemic.
Dealing with the Unknown: Collaboration and Community
As uncertainties surfaced around the pathogenic effects of COVID-19 on children, researchers at Boston Children’s Hospital stepped forward to help answer these questions and support their community. One area of uncertainty faced by decision-makers at the hospital was whether to open their doors to adult COVID-19 patients during the surge. Although adult patients with congenital disease can receive care at Boston Children’s Hospital, adults with diseases acquired in adulthood typically could not. Would this need to change during a pandemic? Ultimately, CEO Fenwick and her team chose to focus on what they knew best and became a pediatric coordinating center that allowed other hospitals to divert pediatric care to Boston Children’s Hospital as they had to reallocate resources to adult COVID-19 patients. To understand more about the effects of SARS-CoV-2 infection in children, one clinician at Boston Children’s Hospital spearheaded the Pediatric International Collaboration on COVID-19 and MIS-C, with an aim to track the disease and its progression in children worldwide. As a result of this collaboration, clinicians worldwide have been debriefed on the types and frequency of symptoms exhibited by children with COVID-19 and MIS-C.
As a board member of the Children’s Hospital Association, an important lesson learned by CEO Fenwick from other pediatric hospital leaders was the importance of taking a “safety pledge”. This pledge asks community members to recognize that their actions have a direct impact on either protecting or exposing their community to greater risks. Boston Children’s Hospital’s extensive efforts to integrate their services into the neighborhoods they serve (including partnerships with community health centers; agencies supporting children’s physical, mental, and behavioral health; and schools and childcare centers throughout New England) have helped them serve higher-risk populations and establish support in local partners. Unlike adults, children cannot be in the hospital alone, thus increasing the number of people who would potentially be exposed to the virus at the hospital. So staff at Boston Children’s Hospital had to ensure that the families of hospitalized children, both from within the community and those who had been transferred from other hospitals, would be kept safe, too. As CEO Fenwick mentioned,
“Families are essential to children when they are sick. They are part of the care team. They support the child, but they support your team as well. And so we had to figure out how to, not only care for the children, but also care for the parents, the caregivers as well.”
Future Directions and Preparations
Keeping in mind the approaching autumn season, the audience sought CEO Fenwick’s thoughts on the future of COVID-19 and Boston Children’s Hospital’s contributions, particularly in vaccine science. As children are not included in the early phases of clinical trials, the hospital’s researchers have been studying precision vaccines and the use of adjuvants to vaccines to try and boost immune system response. When questioned about a COVID-19 vaccine for children, CEO Fenwick reported that Dr. Richard Malley is already studying who should be vaccinated and what specific subpopulations the early vaccines should target. She also shared that Dr. Adrienne Randolph is collecting data for a registry to determine why children are being affected across different strata, including identifying which children would be most susceptible to COVID-19 and vulnerable to developing MIS-C after exposure. Other hospital researchers are studying the long-term effects of COVID-19 on health and development and why the immune response differs in children and adults.
When asked for parting wisdom, CEO Fenwick reminded the audience about the deeply intertwined nature of politics and health in the U.S. As chair of the Children’s Hospital Association Public Policy Committee, CEO Fenwick is passionate about raising awareness on the fragility of systems financing of children’s health and advocating for strengthening these structures. She brought up the fact that over 50% of revenue for children’s hospitals comes from Medicaid and over 36 million children are enrolled in Medicaid and the Children’s Health Insurance Program. In recent years, funding for children’s healthcare has been threatened by pushes to reduce the federal deficit.
Dr. Blendon also mentioned concerns about Medicaid funding from state governments, whose budgets need to be balanced at the end of the fiscal year and therefore face incentives to cut spending wherever they can. This issue will become increasingly important as states face the consequences of the economic downturn caused by the pandemic. As CEO Fenwick reminded the audience, the children in the Medicaid program often have the most complex diseases and thus require complex care, and COVID-19 has disproportionately affected children from Black, Brown, and Indigenous communities. What kind of society reduces access to care for the most vulnerable in the aftermath of a pandemic that has affected them the most? Through her advocacy work, CEO Fenwick aims to make sure government leaders are reminded of the direct impact of budgeting decisions on children's’ lives.
Although she will leave her position in March 2021, CEO Fenwick’s dedication to improving the lives of children and their families has been evident, as she has led Boston Children’s Hospital through multiple crises, including COVID-19. As the dialogue around the pandemic continues, CEO Fenwick’s message reminds us that every decision we make and every crisis we respond to will shape our children’s future reality. Though her leadership will be missed, her mark has been left on the greater Boston community. As she so poignantly asserted, “Children may be only 25% of our population, but they are 100% of our future”.
Story written by Radhika Tampi, a PhD student in the Health Policy Program at Harvard University, concentrating in Decision Sciences. Born in India, Radhika has a keen interest in cost-effectiveness and decision analysis research on the implementation of novel diagnostics for infectious diseases in low-resource settings. She holds a Bachelor of Science degree in Biomedical Science from the Ohio State University and a Master of Health Science degree in Health Economics from the International Health Department at the Johns Hopkins School of Public Health. Outside of her research interests, Radhika loves to share her passion for learning with students through tutoring and mentoring activities in the community (pre-COVID).
Story edited by Sherine Andreine Powerful, MPH (ID: Sherine, Mx., she, they), a Doctor of Public Health candidate at the Harvard T.H. Chan School of Public Health. As a Black Caribbean Feminist, she is committed to celebrating and furthering pleasure, healing, and liberation for Black, Brown, and Indigenous peoples and persons of diverse a/genders and a/sexualities, particularly those from the Caribbean. In this current critical juncture, her lived experiences are moving her towards the creation/curation of a life in which pleasure is greater than productivity. Her present interests additionally include feminist global health and development; gender and sexual health, equity, and justice; and resilience and anticolonial sustainable development in the context of climate change.