This is the second holiday season Seattle Children’s Building Maintenance Technician Jerome Ramos will spend with his family in the hospital.
His daughter has been in the hospital waiting for a heart transplant since July 2021. Before coming to Seattle Children’s, 10-month-old Kaelyn, of Honolulu, Hawaii, was experiencing shortness of breath.
When her face puffed up one day, her parents, Jerome and Christine Ramos, thought Kaelyn was having an allergic reaction and brought her to their local emergency department. Providers ruled out allergies, but recommended Kaelyn have an echocardiogram (ECHO) — a common test used to measure heart function.
Shortly after leaving Kaelyn with the technician, Christine and Jerome heard a voice over the hospital paging system: “Code Blue, ECHO.” “We were in shock,” Christine remembers. “She seemed fine when we dropped her off but when we got back to Kaelyn, we saw our child being resuscitated. It was devastating.”
Kaelyn had been on the brink of heart failure when she was sedated for the ECHO and her heart slowed down to a dangerous pace. It took 45 minutes of CPR to resuscitate her.
She was taken to the intensive care unit and put on extracorporeal membrane oxygenation (ECMO), a treatment that circulated Kaelyn’s blood while she was sedated.
At that point, providers gave Christine and Jerome a choice: They could stop treatment and focus on end-of-life care for Kaelyn, or they could transfer her to a more specialized cardiac team. Four days later, they were on a plane headed to Seattle Children’s.
Facing the unexpected
Christine and Jerome had no time to prepare for their move to Seattle.
“Everything happened so fast,” Christine recalled. “We couldn’t have known we were going to be here this long.” As Christine and Jerome left their jobs back in Honolulu, they had to face new expenses in Seattle, including Kaelyn’s healthcare costs.
Thankfully, the family’s social worker, Maricel Floresca, helped connect them with Seattle Children’s Financial Counseling team.
For many families who don’t qualify for government health insurance programs, Seattle Children’s has a financial assistance program, largely funded by donors, that can help cover the cost of medical care.
“We are fortunate that Seattle Children’s offers a robust financial aid program,” Floresca said. “Just one day in the Cardiac Intensive Care Unit (CICU) costs thousands of dollars, so it adds up quickly.”
Beyond medical expenses
The Ramoses faced other financial challenges, too. Because they didn’t have a car, the parents initially had to find housing within walking distance of the hospital and were often dependent on buying food at the hospital cafeteria. “I think the greatest need our families have is help paying for meals,” said Wendy Datlow, an oncology social worker. “The daily cost of eating in a hospital is shocking, and there is very limited support Seattle Children’s can offer families to help with that.”
Many families who temporarily move to the area to receive care at Seattle Children’s also have additional expenses back home, such as rent or a mortgage, childcare for siblings outside the hospital and utility bills.
“It essentially doubles their cost of living,” Floresca explained. “The cost of gas to get to the hospital from work or home on a regular basis, as well as meals for family members at home and the parents at bedside, is significant.”
After four months in Seattle, Jerome began to look for work and was hired as a building maintenance technician at Children’s. “Everybody on the team is really helpful,” he said. “They’ve supported me and are flexible so I can have a schedule that works for my family.”
It’s been a year since Jerome started working at Seattle Children’s, and while the income has helped his family, he says they still live paycheck to paycheck. He and Christine are renting an apartment in Lynnwood, which is less expensive than housing near the hospital, and spend a lot of money on gas when traveling to and from the hospital.
“We have families who are driving here from all over the state, sometimes once or twice a week,” Datlow explained. “Unfortunately, there are few resources to help families with these non-medical costs during treatment.”
Tragically, families who lose a child also face the unexpected cost of funeral expenses.
“Financial support for funerals is very limited, and the costs are extraordinary,” Datlow said. “It’s really challenging to help families honor their child when we can’t offer enough financial support.”
Impacts of the pandemic and inflation
Some resources that Seattle Children’s social workers previously relied on also dwindled during the COVID-19 pandemic.
“Many nonprofit organizations ran out of funding because they weren’t able to do their typical fundraisers or people were less willing to donate because they weren’t sure about the future of their finances,” Datlow said.
Inflation has also added to the financial burden families with a child in the hospital face.
“I hope that someday our families going through treatment don’t have the additional burden or stress of worrying about how their bills are going to be paid.”
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- Resources for Patients and Family at Seattle Children’s (seattlechildrens.org)
- Social Work – Seattle Children’s (seattlechildrens.org)
- Heart Center – Seattle Children’s (seattlechildrens.org)
- Extracorporeal Life Support Program (ECLS) at Seattle Children’s (seattlechildrens.org)