Within hours of his birth, our son Maximus was diagnosed with a rare condition called Congenital Diaphragmatic Hernia (CDH). His diaphragm was not fully formed at birth, allowing his bowels to move into his chest cavity, displacing his heart as well as crushing and impacting the development of his left lung. The doctors gave Max a 50% chance of survival and it was a very rough start the first few months as Maximus and physicians fought for his life. He spent several weeks in the NICU and more time in the children’s hospital as he underwent several surgeries and procedures to repair his diaphragm, which allowed his lung to re-inflate and his heart to migrate back to the correct side of his chest. Although there’s still a present but diminishing threat of a re-herniation of his diaphragm, I’m happy to report that Max is now an animated 1-year old who is growing and thriving. We feel such gratitude for the excellent care he received at Johns Hopkins.
When we were staying at the hospital for one of Max’s surgeries, I ran into a grandmother of an infant patient in the family lounge. We chatted for a while, and during our conversation she shared that she was visiting for two weeks and staying at a hotel. Her son and daughter were living in a tiny hospital room at the Children’s Center until either the Children’s House or Ronald McDonald's house had an open room. They were all from Tennessee and had traveled all the way to Baltimore for specialists that could care for their babies’ rare condition. They would be there for months while their tiny baby had multiple surgeries. Right then I realized how incredibly lucky we were to be in Baltimore and so close to such amazing hospitals. Had we lived in a more rural area, Max may not have had access to the critical treatment he needed for survival, especially since we weren’t aware of his life-threatening condition before birth. When we were in the NICU, we could get home in 10 minutes, but many families traveled hours to be there each day and stayed months longer than we did. I thought about it all night and most of our stay. And I wondered – what if people living nearby hospitals could volunteer rooms in their homes to traveling with loved ones for care?
Inspired by the challenges my son faced when he was born last year, I created Hosts for Humanity. Hosts for Humanity matches volunteer hosts with patient families seeking a place to stay while their loved ones receive care, and is being piloted in Baltimore, Maryland. Volunteer hosts are able to list available accommodations in their homes. Whether an apartment for a few days, or an entire home for a month, Hosts for Humanity connects family and friends of patients with volunteer hosts, allowing them to stay in a low-fare and supportive environment.
Together, we are leveraging the collective compassion of volunteers to create environments of refuge for people when they need it the most.