Coronavirus Impact: Social distancing strains emotional support network for families of sick children

ByJuan Carlos Guerrero KGO logo

Thursday, May 14, 2020

Social distancing strains emotional support network for families of sick children

For 40 years, Family House in San Francisco has offered free temporary housing for families of critically ill children getting care at UCSF Benioff Children's Hospital, but the social distance order is getting in the way of a critical support network.

SAN FRANCISCO (KGO) -- Social distancing is not what Family House is about. The organization provides free temporary housing for families whose children need treatment at UCSF Benioff Children's Hospital in San Francisco.

It is a place where parents can talk to parents about their sick children and find a compassionate ear.

"We all share a common bond - a child with a life-threatening disease," said Skip Maynard, the father of a young boy who was in dialysis for months waiting for a kidney transplant.

The Maynard family traveled from Idaho to get care at UCSF. Twelve-year-old Samuel Maynard was set to get a kidney transplant from a family member in October of last year, but ultimately that family member could not be the donor. Since Samuel's kidney continued to deteriorate, he was put on dialysis.

"Once he needed dialysis, we felt that the best thing for him was to stay here in San Francisco, receive the dialysis therapy here at UCSF while we found him a donor," said Dr. Erica Winnicki, a pediatric nephrologist treating Maynard.

The Maynard family was able to stay at Family House while they waited for a donor. The wait lasted until March 17, five months after arriving in San Francisco.

"Eventually a family friend was found who could donate on behalf of Sam. That person entered into a kidney exchange program, where his family would donate a kidney to somebody else with the expectation that another person would donate a kidney for Sam," said Dr. Winnicki.

Maynard got his new kidney on the same day the Bay Area stay-at-home order took effect. The lockdown had a profound impact on Family House. It has always been more than just a place for families to stay while a child receives care. The communal areas allow families to spend time together and offer insight and compassion for each other. Social distancing upended that support network.

"It is the exact opposite of the way that we run," said Alexandra Morgan, CEO of Family House. "We want families typically to eat together, to know one another. And to come together to share their life stories when they are going through the worst time of their lives."

As a result of the social distancing guidelines, Family House closed communal spaces like the music room. Families take shifts to use the kitchen and then eat meals in their rooms. No visitors are allowed and social workers offer therapy and other services remotely. Even the simple act of wearing a mask has been difficult.

"You can't really see someone's face. It's to keep everyone safe. You are not readily able to reach out like you did before," said Damian Uriarte, a resident of Napa who is staying at Family House after his daughter became critically ill from influenza B and is now waiting for a heart and kidney transplant.

Uriarte says the staff and other parents were able to tell when someone was in distress by the expression of their face. He says that is more difficult now with everyone wearing a mask.

"Usually this place has a hustle and a bustle," said Morigan Delgado, a Fresno resident who is at Family House after her 1-year-old son, Montgomery, underwent a second open-heart surgery. "This is not normal to raise a child at the hospital. To find someone who understands that is incredibly important. It is hard not to have that socialization."

Family House is running at about 80% capacity right now. It is not because they are limiting who can stay there, but because the hospital has delayed elective and non-critical surgeries and there are less families that need to stay there. That is changing as the hospital is ramping up its surgeries once again.

"We are note going to limit the families because that is what we do," said Morgan. "There will be constant cleaning in the house. We will keep asking the families to social distance, but we do not want to turn away families that come for treatment at UCSF."

For the Maynard family, their stay of seven months at Family House is about to end.

"I am just kind of waiting so I can just get home," said Samuel Maynard, who just has to undergo a few more exams before he can go home again.

"He is expected to have a fantastic life with his family members in Idaho. We are excited to get him back home and living his life," said Dr. Winnicki.

The other families are looking forward to the same outcome, even while they deal with the new restrictions.

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