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Emi’s Story

MYTH - Presence of Essential Care Partners is nice to have, but doesn’t impact quality or safety

FACT -  Essential Care Partners are a constant part of a patient’s care journey and know them best. They play a significant role in providing and supporting care, and should be recognized. [1,2] Restrictive policies during the pandemic have led to increased caregiver distress and isolation.[3,4]

Emi is 6 years old, deafblind, can’t hold his head up, sit, stand or walk by himself and requires full support for all daily living activities. He suffers from a sleep disorder and is frequently ill. His parents are his sole caregivers. See their story

Emi's Story

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April 8, 2015: Emiliano 6.5 pounds Welcome baby boy

April 11, 2015: We brought our second baby boy home from the hospital.  Meet your little brother Baby Cute

April 12, 2015: At night Emi started having breathing difficulties.  … We rushed him to the hospital

Our baby stopped breathing and had a devastating brain injury. He was intubated for 20 days.  30 days in NICU

Soon came the first diagnoses: Cerebral palsy, seizures, dystonia, deafblindness.  The brain injury was extensive. He might never be able to walk, see or hear.

Suddenly life became a roller coaster: Therapies, treatments, surgeries. We soon discovered that caring for a medically complex child is more than a full-time job.  I’m going to quit my job. We don’t have support and Emi needs full-time care.  Emi had severe functional limitations and fragile health. He required extensive care and support. Not having adequate services and supports was very challenging.

When the pandemic started we were even more isolated and lonely.  Nobody understands what my family is going through.

July 30, 2021: Emi is now 6. He is deafblind. He can't hold his head up, sit, stand or walk by himself and requires full support for all daily living activities. He suffers from a sleep disorder and is frequently ill. His parents are his sole caregivers.  We feel invisible

  1. Institute for Patient- and Family-Centered Care. “Patient-and Family-Centered Care.” (2010), https://www. Ipfcc.org/about/pfcc.html.
  2. Evidence Brief: Caregivers as Essential Care Partners. 2020. Evidence Brief: Caregivers as Essential Care Partners (cfhi-fcass.ca)
  3. Hegelius et al. 2021. Consequences of visiting restrictions during the COVID‐19 pandemic: An integrative review. Consequences of visiting restrictions during the COVID‐19 pandemic: An integrative review - ScienceDirect

Raphael et al. 2021. Unintended consequences of restrictive visitation policies during the COVID-19 pandemic: implications for hospitalized children. Unintended consequences of restrictive visitation policies during the COVID-19 pandemic: implications for hospitalized children | Pediatric Research (nature.com)