Editor’s note:Members of AAP sections reflect on the challenges their specialty has faced during the COVID-19 pandemic and how it has changed the way they practice. This is the first of two installments. Part II will appear in the October issue.
Genetics: Telehealth not always optimal
For many specialties, a history and physical exam are key components to elucidate an underlying cause of a child’s medical issues. In genetics, specifically dysmorphology, the physical exam is king. The ability to fully appreciate the gestalt of an individual’s face and to look for subtle changes on small areas such as the earlobes, finger pads, teeth or eyelids are what make the field of genetics so special and so challenging.
Transitioning to telehealth for almost all visits has thrown a wrench in the dysmorphologist’s proverbial toolbox. Doing a detailed physical exam to fully grasp a child’s features is essentially impossible due to hazy screens and the child (and sometimes household pets or siblings) running around in the background.
We work around it as best we can. We have parents send us close-up photographs of their children, and we’ve engaged families in assisting with a physical exam over the computer. We’ve also leaned heavily on a more detailed medical and family history — similar to when a person loses one sense and the remainder are heightened.
No matter our efforts, however, I find myself saying more and more, “I’d like to see her in person” before I can make a definitive decision on a diagnosis or testing options. Parents are certainly understanding, but the added appointments are difficult for both providers and families.
As with most things in life, I had not valued the necessity of face-to-face encounters until they were taken away. If and when medical practice returns to “normal,” I will appreciate the laying on of hands as we travel the diagnostic odyssey with our patients.
— Samantha A. Schrier Vergano, M.D., FACMG, FAAP,member of the AAP Council on Genetics Executive Committee
Pediatric emergency medicine: Learning from each other
Early in the COVID-19 epidemic, the Pediatric Emergency Medicine North American Chiefs (PEMNAC) used our email list to ask questions, provide information and discuss key medical and operational issues with about 140 pediatric emergency medicine (PEM) chiefs across the U.S. and Canada. We learned from firsthand experiences, including those who were affected early or especially hard.
As it became clear that children were not the primary coronavirus target, we discussed other ways we could help, which included refocusing or shutting down pediatric emergency departments (EDs) and caring for older populations in areas of need.
When the Pediatric Academic Societies meeting was canceled, we held a virtual PEMNAC meeting focused mostly on COVID-19. Our meeting included colleagues from Italy, who had been affected in ways that many of us had not, as well as U.S. ED and infectious disease experts. Through presentations and discussion, we learned an amazing amount about the virus, its trajectory, our successes and failures, and the evolving concern for the Kawasaki-like syndrome reported in Europe and New York City.
The group surveys our members frequently, which provides invaluable data on staffing models, costs and ways to ensure that PEM remains a viable safety net for individual facilities, systems and regions. It was clear that our disaster and infectious disease preparations and the resilience of emergency systems/providers, including physicians, nurses, ancillary team members and prehospital providers, would enable us to care for patients and families in a way that would optimally protect our providers. We used this up-to-date national information and data to inform our leaders and help design new and innovative ways to manage patients, families, personal protective equipment and processes.
We've also learned from each other to recognize and address stress, burnout, anxiety and fear in ourselves and our colleagues.
— George A. Woodward, M.D., M.B.A., FAAP,chair of the Pediatric Emergency Medicine North American Chiefs
Nephrology: Not all patients infected, but all affected by COVID-19
Multiorgan failure, including renal failure, as a complication of SARS-CoV-2 infection affects 16%-23% of adults in the intensive care unit (ICU) setting. While children have been less affected, the demand on adult systems has had downstream effects on pediatric nephrology practices. Overcapacity in adult ICUs as well as nationwide shortages of dialysis equipment and dialysate solutions have created significant challenges for pediatric nephrology practice.
Pediatric nephrologists have and continue to assist adult colleagues during the COVID-19 pandemic. Many have cared for adult patients needing ICU care and renal replacement therapy. When COVID-19 cases soared in New York state, pediatric nephrologists cared for and dialyzed adult patients within the walls of their children’s hospitals. This was done while continuing not only the care of their own patients but also the culture of care that is uniquely pediatric.
Many institutions have put measures in place to conserve dialysis equipment and supplies. These actions include carefully considering the need for preemptive continuous renal replacement therapy (CRRT) on ICU extracorporeal membrane oxygenation patients; limiting CRRT to half-day sessions so more than one patient per day could use a machine; conserving CRRT solutions by decreasing replacement fluids and clearance as able; and, when appropriate, utilizing intermittent hemodialysis to conserve and make available CRRT machines.
Throughout the COVID-19 pandemic, pediatric nephrologists have continued to care for high-risk patients with immune-compromising illnesses, hypertension and children on chronic dialysis unable to shelter at home. Living and deceased donor kidney transplants were placed on hold at many institutions. Only highly sensitized recipients received transplants and only after additional consent from the recipient’s family that SARS-CoV-2 transmission was possible.
Within our subspecialty, we have found that while not all of our patients have been infected by COVID-19, we all have been affected by it.
— Stephanie M. Jernigan, M.D., FAAP member of the AAP Section on Nephrology Executive Committee
Pediatric palliative care: Finding hope in the face of uncertainty
As the COVID-19 pandemic hit, pediatric palliative care (PPC) teams mobilized in a number of truly innovative ways.
The PPC team at Children’s Hospital at Montefiore in Bronx, N.Y., developed an incredible surge-in-place program, quickly training colleagues from other fields to provide palliative and bereavement care to adults in their larger hospital community (https://bit.ly/3k0yBwc, https://bit.ly/3hVoVRQ).
Colleagues in adult palliative care developed the COVID Vital Talk Playbook (https://www.vitaltalk.org/guides/covid-19-communication-skills/) for communication with adults and their families. Shortly thereafter, PPC colleagues released a version adapted for pediatrics.
Teams offered their services at neighboring adult hospitals, obtaining emergency privileges and helping them to flex up their palliative care workforce at a time when so many adults are dying of this terrible disease.
Pediatric palliative care subspecialists also helped develop symptom management protocols in the event of ventilator shortages, pivoted to virtual bereavement support groups for grieving families, informed family presence policies and learned new ways to work as an interdisciplinary team while staying safely physically distanced.
As our colleague, Chris Adrian, M.D., wrote so beautifully, “…working with families over months and years teaches you to hope that life reconstitutes on the other side of catastrophe, and that people can find joy in living again on the far side of unbearable loss” (https://bit.ly/2DsGKbR). And so, despite it all, we found hope.
As we all cope with the uncertainty introduced by the COVID-19 pandemic, the experience gives us a glimpse into one aspect of the lives of our patients with serious illness and their families. Many have lived with deep uncertainty before the pandemic and will continue to live with it after the pandemic is gone.
We continue to support patients with serious illness and their families and hope that in the coming months, our services are needed less and less.
— Elissa Miller, M.D., FAAP member of the AAP Section on Hospice and Palliative Medicine
Ophthalmology: From eating chips to seeing pets and kitchen ceilings
I have the dates in my calendar. March 6: work-related travel restricted. March 11-12: nonurgent patients rescheduled, elective surgery postponed. During the following week, I didn’t know what to do with myself and ate a lot of chips. I had a big deadline looming but was distracted by reports from Italy and pandemic updates. Compared to retina colleagues, whose patients may acutely lose vision if appointments are delayed, I didn’t feel all that useful at the time.
Then, we were notified of opportunities to help elsewhere in the hospital. I learned and taught the ever-changing personal protective equipment guidelines for frontline health care workers. I was the physician-on-site in the COVID-19 testing clinic. Ophthalmology residents volunteered to be redeployed to the ward or intensive care unit if needed; fortunately, our institution did not reach this level of crisis.
Eventually, we started to see patients again … virtually. We quickly found that checking vision is a particularly daunting task for children and their parents at home. Chart correctly printed; accurate distance from chart; eye not being tested completely covered; child engaged. During some telehealth visits, much time was spent ensuring the camera was aimed at the child, not the kitchen ceiling. Still, it was wonderful to see patients again and sometimes meet their dogs and grandparents.
Now, I see patients in clinic every day, though many parents are still leery about keeping their child’s appointment. Our teams are continuously revising the clinic flow. Patients wait outside if a room needs cleaning. Instrument shields are cumbersome. I cannot use some equipment while wearing goggles. Masks are taped to prevent glasses from fogging. The patients have been gracious and a joy to see again in person.
Declining COVID-19 numbers in our state are encouraging. I trust we will remain vigilant while continuing to provide care for our patients.
— Sylvia H. Yoo, M.D., FAAP, member of the AAP Section on Ophthalmology Executive Committee
