‘They Were Family’: Methodist Fremont Health Hospice Program Provides Comfort and Connection Amid Its First Infant Case

Photo courtesy of: Amanda Fish Photography

Stephanie Baustian of Fremont described her fifth pregnancy as healthy but “rough” – not like the others.

“I always told people, ‘This baby is going to be stubborn and sassy,’” she said with a laugh. “I was sick through it all. And I really didn’t get sick with my four boys. Also, none of them went past 38 weeks, so I thought for sure my daughter would be the same. She wasn’t. She went right up to my scheduled C-section date.”

Baby Isabella – Ella for short – was born Jan. 27, 2020. She looked small but “so perfect” in her 6 pound, 4 ounce frame.

Looking at her big, bright blue eyes, “you’d never guess that there was anything medically wrong with her,” said Stephanie Phillipson, LCSW, a hospice social worker with Methodist Fremont Health.

But unfortunately, there was something wrong with Ella.

Coming to Terms With Hospice

At 5 weeks old, Ella – who was struggling to gain weight – suffered her first seizure. This marked the beginning of several hospitalizations and various tests that eventually led to a rare diagnosis: early infantile epileptic encephalopathy – a terminal neurologic disorder.

“We were told she wouldn’t live a full life,” Stephanie said. “Most babies don’t make it to their first year. Very few make it past 2 years old.”

Still, Stephanie wasn’t too keen on the idea of hospice care – physical, mental and emotional support in the final days of a patient’s life – when it was proposed by Ella’s care team.

“I was hesitant because I knew that it meant end of life, and I wasn’t ready for that. I didn’t want to be there yet – where that was it, she was done.”

But a monthlong hospital stay in September 2020 helped Stephanie come to terms with the idea.

“I finally decided that I didn’t want her to spend the rest of her life in the hospital,” she said. “I wanted her to be home with her family.”

Being Present

Ella’s care team got to work in identifying a hospice agency equipped to take on a pediatric patient in the Fremont area. The Methodist Fremont Health Hospice program answered the call.

“Our team had never done that before,” Phillipson said. “Ella was our first infant, and the things we did for her, we’d never have to do for a senior. It was more emotional, more challenging. The choices that had to be made were more difficult. The whole process was just different.”

Phillipson and Collette Heiman, RN, CHPN, a Methodist Fremont Health Hospice nurse, quickly established a connection with Stephanie and developed a love for Ella like she was one of their own. Heiman provided in-home care and comfort for Ella while Phillipson provided her sheer presence.

“One of the biggest things I focus on in my role – whether my patient is 2 months old or 102 – is being present enough to figure out what their needs are, what their family’s needs are,” Phillipson said. “As a mother myself, I think that protective factor that I felt toward Stephanie and her family in making sure that, no matter what, we were going to honor everything they wanted – that was just heightened.”

Phillipson’s “heightened” sense of Stephanie’s needs inspired her to track down a fetal Doppler heart monitor from her colleagues at Methodist Fremont Health Hospital to record Ella’s heartbeat as a keepsake for Mom. Phillipson also quickly coordinated professional family photos in the comfort of Stephanie’s home as soon as it became apparent that Ella’s health was declining.

Saying Yes to the Community

Ella passed away Oct. 15, just 12 hours after the family photos were taken.

“I remember having a conversation with her, telling her it’s OK if she goes – that Mommy and her brothers would be OK,” Stephanie said. “She took her last breath at about 3:20 a.m. as I was holding her on my chest. Collette was on call when Ella passed, so she came right over. And I think she cried just as hard as I did.”

“Seeing this young mom who wanted nothing more than to just hold on to her baby after she had passed – it was so difficult and so beautiful at the same time,” Heiman said, becoming emotional. “Who would have thought that right after that photo shoot, I’d be turning around to go back there in the middle of the night to pronounce this beautiful little baby deceased and wait for the mortuary to come pick her up. It was the longest, yet the fastest, 12 hours of my life.”

“It was the saddest, most difficult case we’ve ever had,” Phillipson said as she began to choke up. “But it’ll certainly always be the most fulfilling. Still now, a year and a half later, I tear up thinking about that sweet, angelic little girl. I know she made me better – personally and professionally.”

And when Phillipson thinks about the opportunity her team had to say no to Ella’s case for lack of pediatric experience, she’s immediately filled with pride.

“The unique thing about Fremont is the importance we place on taking care of our community members – even when it’s uncomfortable, even when it’s unfamiliar. We were asked the question, and – without hesitation – we all said, ‘It’s going to be hard, but yes, absolutely. We’re on it.’ You don’t get that everywhere. In fact, other agencies were approached, and they said no. We said yes.”

And Stephanie is beyond grateful they did.

“I’m a very emotional, physical person,” Stephanie said. “Even with COVID, they were still so comforting. We hugged, we connected. They didn’t make us feel like just another hospice family. They made it seem like we were on our own little journey. They were always there for us. They were family.”

“And she’ll always be part of ours,” Heiman added.