By Randolph Fillmore
No one needs to be reminded of how the COVID-19 pandemic has disrupted or complicated nearly every aspect of our lives, including health care. While daily news feeds have kept us abreast of rising hospitalizations for COVID-19 and the resulting challenges for health care systems, recent reports have revealed the spike of COVID-19 pediatric cases.
As recently noted by the American Academy of Pediatrics and the Children’s Hospital Association 203,962 pediatric COVID-19 cases were reported during the week from Aug. 19 to Aug. 26, 2021 representing 22.4% of the weekly reported cases.
One under-reported issue, however, is how COVID-19, from the early months of the pandemic, has affected those children on the “waitlist” for heart transplants.
“From the beginning, the COVID-19 pandemic has had severe implications for patients who are on waitlists for transplants,” says Awais Ashfaq, MBBS, a cardiovascular surgeon at the Johns Hopkins All Children’s Heart Institute and lead author on a study recently published in the North American regional journal of Lancet.
This study described the regional and national variation in adult and pediatric heart transplant activity and waitlist mortality during the COVID-19 pandemic for the year 2020 as compared to the previous three years.
Johns Hopkins All Children’s has one of the oldest pediatric heart transplantation programs in Florida and the study, carried out by Johns Hopkins All Children’s Heart Institute, including surgeons, cardiologists, intensivists, epidemiologists and biostatisticians, has provided hard data and details on how the pandemic has impacted pediatric heart transplants nationwide. The study proposal was reviewed and approved by the Johns Hopkins All Children’s Hospital Institutional Review Board.
The researchers report that the number of pediatric heart transplantations in the United States declined in early 2020 due to the COVID-19 pandemic’s disruption of normal health care. Data derived from several sources, including the United Network for Organ Sharing (UNOS) database, also provided information on pediatric patients on the heart transplant waitlists.
A “snapshot” of the researchers’ findings included:
- For the pandemic year 2020, time on the “waiting list” for pediatric patients to receive transplants decreased by 28 days as compared to the three previous years.
- There were regional differences in pediatric waitlist mortality
- During 2020, the monthly average number of pediatric heart transplants remained steady at 39
- In the United States, pediatric waitlist mortality decreased in the North and Midwest, but increased in the South and West; transplant rates decreased for the Northeast and Midwest but increased for the South and West
- In the first four months of 2020, transplantation rates declined, but increased by May 2020
Under pandemic conditions, Ashfaq says, these vulnerable pediatric patients were at a much higher risk – both for acquiring a COVID-19 infection and having their heart failure worsen as the number of pediatric heart transplantations slowed and waitlists were inactivated at many centers.
“Early in the pandemic, children were generally not found to be affected by COVID-19,” Ashfaq says. “But that is not the case now as pediatric cases of COVID-19 have risen sharply and continue to increase.”
There are many unanswered questions regarding COVID-19 in children. Ashfaq points to the fact that COVID-19 affects the heart muscle more than the COVID-19 vaccines, contrary to what many people believe.
Pediatric Waitlists — Inactivations, Mortality and Regional Variation
The Johns Hopkins All Children’s study reports that in the early days of the pandemic, many medical centers “deactivated” patients on transplant waiting lists.
The data revealed that differences in waitlist inactivations, waitlist mortality and transplantations performed varied from region to region during the 2020 pandemic year. “When we looked at various regions of the U.S., such as the Northeast, Midwest, West and South, we found differences in increases and decreases in pediatric heart transplantation waitlist mortality,” Ashfaq explains.
For example, North Dakota, Oklahoma and Hawaii showed higher pediatric waitlist mortality than other states. Pediatric mortality decreased in the Northeast and Midwest, but increased in the South in Florida, Georgia, Arkansas and Louisiana. The West remained unchanged.
According to the study authors, although stable adult patients on the transplant waiting list may be temporarily inactivated during a pandemic, this option does not always exist for pediatric heart failure patients as the majority are inpatients, perhaps on mechanical assist devices, and had not reached a sustainable point for outpatient management.
While the reasons behind the varying trends in pediatric waitlist mortality and transplants are unclear, the researchers hypothesize that contributing factors were a decrease in health care workers and a change in availability of health care resources – including health care workers – as many were diverted to care for those with COVID-19.
Generally, the volume of adult and pediatric heart transplants declined along with increased waitlist inactivations, decreased waitlist additions, and a subsequent decrease in donors for fear that donors might have been infected with COVID-19.
The study also reveals, however, that transplantations began to increase after May 2020.
But for the sharp decrease in the first four months of 2020, over the year the national average number of pediatric heart transplants – 39 per month – did not change. Ashfaq adds that the normal average number of pediatric heart transplants per transplant center nationwide is 10 to 12 per year.
“This implies that centers and the heart transplantation community began to adapt to new social distancing norms as they dealt with the pandemic,” explains Ashfaq, who came to Johns Hopkins All Children’s in November 2020 after having served a congenital cardiac fellowship at Cincinnati Children’s Hospital Medical Center, completed a residency in general surgery at Mayo Clinic in Arizona, where he served as chief resident, and completed a fellowship in cardiothoracic surgery at Oregon Health Sciences University in Portland.
Policy Implications for Transplantation in Future Pandemics
“The transplant community should be proactive and equip ourselves with improved preparation, organized systems, and put systematic processes in place for the next pandemic,” concludes Ashfaq, who has an extensive list of published studies.
To counter fears that heart donors may have been infected, the researchers suggested that under pandemic conditions, considerations for donor offers should include detailed donor travel history and related health exposures, to include high-risk behaviors for contracting and/or transmitting a highly contagious, lethal infection. To be considered as well is the possibility that under pandemic conditions patients – adult or pediatric – and their families may avoid hospitalization for fear of contracting infection, but get sicker at home. When they do come to the hospital they are in a dire clinical state and, consequently, become worse transplant candidates.
“The transplant community needs to be more innovative and develop systems such as telemonitoring, improved accessibility, and dedicated intensive care unit beds,” concluded the researchers.
The authors concluded by asking if when the health care system returns to normal, or a “new normal,” is established, will waiting list mortality for both pediatric and adult patients return to previous levels? They promise to answer this question in their ongoing studies.
“The messages are that the COVID-19 pandemic is not going away anytime soon and that the transplant community needs to find ways to work around it,” Ashfaq says. “We thought things would get better with the availability of vaccines, but the delta variant has changed things. We’ll have to see how this plays out.”