Creating a Safe Space for Stephen

As the coronavirus pandemic took over in early 2020, our family followed the safety guidelines. Two of my four children, Stephen and Caroline, were born with a rare genetic metabolic disorder. They are among the most vulnerable to the virus. Life with a rare disease means we are always on high alert, but the pandemic left us feeling more exposed than ever.

Stephen needed to visit the emergency department (ED) at Children’s National Hospital during the quarantine. I feared coming to the hospital because of potential exposure. Doctors diagnosed him with an obstructed kidney stone and other complications. I watched his highly-synchronized team in action when he became septic.

In the pediatric intensive care unit, Stephen’s team addressed his kidney issue while keeping him metabolically stable. I forgot about COVID-19 for a while. I felt safe in our room. Everyone from doctors and nurses to the environmental services staff took precautions when entering. I left the room only to shower, eat or get coffee and occasionally for fresh air in the Healing Garden. Stephen was excited to go home a week later. His disease caused brain damage when he was 3. There’s a lot he doesn’t know, but he knows what it means to go home.

Our family faces medical concerns, fears and difficult decisions every day. The threat of the coronavirus has intensified that. Staff at Children’s National kept us safe without compromising my son’s urgent need for treatment. They know him and his challenges. Most importantly, they recognized that some of those considered “most vulnerable” are everything to my family.