Guest Editorial: Growing up in the CCU: Supporting Families Through the Long Haul


 “The power of community to create health is far greater than any physician, clinic, or hospital” – Mark Hyman

In October of 2021, the American Academy of Pediatrics (AAP), American Academy of Child and Adolescent Psychiatry (AACAP), and Children’s Hospital Association (CHA) jointly declared a national emergency in children’s mental health. This crisis has been exacerbated exponentially by the COVID-19 pandemic. Unprecedented rates of exposure to the death of friends and family, physical and social isolation, and living with ongoing uncertainty have all been cited as major precipitators of the worsening mental health outcomes in our young people. These precipitators are largely new to the general population. But they are certainly not new to the patients and families living with complex congenital heart disease that we routinely serve in the cardiac care unit (CCU).

Like almost everything else in medicine, our underrepresented and underserved populations bear the greatest burden. In the first year of the pandemic, over 140,000 children in the United States experienced the death of a caregiver, with minority groups disproportionately affected1. Minority and lower socioeconomic status families have been overrepresented amongst those who have had to face the pandemic head-on as frontline workers or whose jobs could not easily translate into safely working from home. The physical, emotional, and financial toll of COVID impacts healthy families but has an even greater impact on families navigating chronic illness.

For our patients and families, our units become their households. Their admissions are recurrent and sometimes prolonged. With lengthening transplant waitlist times, admissions may be on the order of months. A 3-day hospitalization for an asthma exacerbation and a 7-month hospitalization for a heart transplant are not even in the same galaxy.  For these reasons, the CCU cannot be treated like the rest of the hospital. In hospitals around the world, masks, visitor restrictions, and physical distancing have been a necessary evil in the darkest times of the pandemic. They have saved lives, but they have also had a tremendous cost.

Conflict between parents and providers in these extended-stay situations is common, most often related to difficulty with communication or shared expectations2.  Even before COVID, our families were facing significant psychosocial stressors – disruptions to the family routine, job insecurity, out-of-pocket healthcare expenditures, social isolation, caregiver burnout, loss of control, and higher rates of anxiety, depression, and PTSD3. This may be particularly true for patients and families who are far from home, friends, outside sources of support, or other people that look like them. Families from marginalized groups such as racial and ethnic minorities, sexual and gender minorities, and people with disabilities may struggle even more to find common ground with their healthcare team.  This is made so much worse when families and providers are stressed, as we have all been these past 2 years. WE (the healthcare providers who have historically been asked to “rise above” and mediate these conflicts) are facing many of those same stressors in our own personal lives. Thanks to COVID, we are all burning out.

It is our job to turn our CCU household into the supportive environment our patients and families deserve. This requires us to dig deep and determine what each individual patient and family really need to weather this burden of prolonged hospitalization.

  • Keeping Families Together: As COVID infection rates rise and fall, we must continue to thoughtfully balance the infection control benefits of a visitor restriction against the very real mental and psychosocial health benefits of occasionally seeing family and friends in person. This needs to be done equitably for everyone; not just for the families who are brave enough to push for visitor exceptions. Early in the pandemic, our unit devised what we considered to be a fair and equitable standard for visitors. After a month in the hospital, visitor rules are progressively modified to safely accommodate additional visitors. Our families have been grateful and many families who might not have been comfortable asking have been able to experience brief reunifications.
  • Optimizing Communication: We have also tried to implement “Co-Agreements” that explore the needs of families and providers alike, with mutually agreed upon arrangements based on the specific goals and values of the individual families we serve. Co-Agreements allow families to clearly communicate what they need from the healthcare team. We try to generate Co-Agreements proactively for families who may experience prolonged exposure to our CCU household. This helps offset some of the implicit bias that may result in the unequitable execution of behavior contracts for families who are labeled “difficult”. We believe that these discussions set the stage for an evolving relationship built on mutual trust and help open the lines of communication that will aid with inevitable future conflicts.
  • Building Community: Historically, many of our extended-stay families have drawn comfort from the peer support they found from other Heart Parents on the unit. Gone are the days of chance encounters or meetings over dinner in the Ronald McDonald House. Finding ways to reinstitute some of these peer-to-peer supports in the post-COVID era is critical. We have been working closely with social work and child life to create new opportunities for parents and patients to come together (either cautiously in-person or virtually) to bring back that sense of community that has been such a critical aspect of inpatient CHD care. We used to host a weekly inpatient yoga class for our patients on the unit. We are not sure we will ever be able to do that again. But in partnership with our patients and families, we must continue to find other ways to show them they are not alone in this journey. Our recent resumption of a socially distanced infant developmental therapy group, summertime teenage book club, and last month’s hybrid virtual/in-person parent support night are important first steps.
  • Supporting Mental Health: Mental health support for our families is difficult to obtain, worsening during this pandemic. Even with private insurance, it is nearly impossible to schedule an appointment with a therapist.  We are grateful for our new partnership with the Ollie Hinkle Heart Foundation ( to bring much-needed parent mental health support to the Heart Center, beginning during fetal life, continuing both inpatient and outpatient.
  • Connecting with Resources: We know that families are facing an unprecedented erosion of the social safety net. The normal mechanisms and community support for weathering hardship have been destroyed by COVID. All these problems disproportionately affect families navigating chronic illness. Ensuring that we are carefully cataloging the social determinants of health and providing resources where possible can make a tremendous difference for families. In our unit, we utilize an EPIC screening template that not only tracks the social determinants at every encounter but immediately connects to community resources that can troubleshoot the issues.

Our CCU household has been forever changed by the COVID pandemic. Our patients are facing unprecedented social and physical isolation made exponentially worse by their chronic illness. We are not sure that we will ever be able to go back to the way things were. But the pandemic has also taught us some crucial things about what’s important. Family is important. Supporting each other is important. This CHD community is important. For those living with us for the long haul, we must become their family, psychosocial support, and community. In doing so, we have the unique opportunity to help build the resilience they need to tackle the hardships they face.






  1. Hillis SD et al. COVID-19–Associated Orphanhood and Caregiver Death in the United States. Pediatrics December 2021; 148 (6): e2021053760. 10.1542/peds.2021-053760
  2. Studdert DM et al. Nature of conflict in the care of pediatric intensive care patients with prolonged stay. Pediatrics vol. 112,3 Pt 1 (2003): 553-8. doi:10.1542/peds.112.3.553
  3. Allen KY, Davis A. The hard talk: Managing conflict in the cardiac intensive care unit. Progress in Pediatric cardiology, 59, [101306].

Kiona Y. Allen, MD

Assistant Professor of Pediatrics
Feinberg Northwestern School of Medicine
Interim Medical Director, Regenstein Cardiac Care Unit
Ann & Robert H. Lurie Children’s Hospital of Chicago
Chicago, IL, USA


Amy S. Lay, MD

Associate Professor of Pediatrics
Feinberg Northwestern School of Medicine
Director of Non-Critical Care Inpatient Cardiology, Regenstein Cardiac Care Unit
Ann & Robert H. Lurie Children’s Hospital of Chicago
Chicago, IL USA