Community Becomes the Heart of Baby William’s Health Journey 

For Katie Staley and Betsy Olesen, finding out they were pregnant was a dream come true. “We were really excited, of course,” said Katie. “And we were really excited once we learned it was a boy. Because you weren’t talking about a baby, you were talking about a person, and you start thinking about all the things that William could or would be.”

First-time parents Katie and Betsy eagerly anticipated the day they would meet baby William and become a family of three.

But things took a turn at their 20-week ultrasound.

“Our OB paused and told us that there was something we need to look at further with his heart,” Katie said. “She told us we needed to see a specialist.”

An echocardiogram revealed that baby William had heterotaxy syndrome, a rare condition where organs are formed abnormally. For William, it meant he would need a heart transplant shortly after birth.

“Suddenly you’re faced with all of these thoughts, like will he ever come home?,” Katie said. “Which is a sobering thought. Thinking about the milestones you wouldn’t get to have as a first time mom, as simple as I wasn’t sure if I would get to hold him after birth.”

Thankfully, the two had planned on a weekend family getaway right after their specialist appointment, which meant they’d be surrounded by loved ones as they took in the news. The initial support received on that weekend would carry them through packing up their lives and moving nearly four hours away to the hospital they’d call home until William received his heart transplant.

They’d planned on staying at the hospital for two or three months while awaiting William’s transplant. They ended up staying close to a year.

“We tried many times to come out of the hospital with William, but it just didn’t work out for us. He needed to be at the hospital,” Katie said.

So Katie and Betsy focused on being William’s parents and making the best out of their situation. They decorated their hospital room as if it was their living room. “It wasn’t easy by any stretch,” Katie reflected. “But we really took the initiative to live where we needed to live.”

Still, the new moms struggled with isolation and loneliness. Living in the hospital with their newborn during COVID-19 restrictions meant strict guidelines around visitors. “We knew our journey was going to be a little bit different,” Betsy said. “When we’re going through such a stressful time, how do we tell people what’s going on?”

Katie and Betsy started a CaringBridge page for William about a month before he was born. “Nobody could even visit us for the first three months of William’s life, and it was extremely lonely,” Katie said. “CaringBridge definitely made us feel less alone because people were celebrating the exciting things William was doing, and they were grieving the things that we needed to grieve.”

The most exciting day for William and his parents happened 10 months after his birth. That day, they’d taken him to a little park just outside the grounds of the hospital.

“We’d sit on a bench there and watch cars. It was his favorite thing to do,” Betsy said. “And then all of a sudden, we heard these thuds. It was our nurse, sprinting at us with the phone saying, ‘You need to take this call.’”

There was a heart for William.

“After we got to write that post and share it with the world, the floodgates opened,” said Katie. “Everyone was so excited, so happy. Other than sharing William was born, it was the most exciting journal post that we ever got to put on CaringBridge.”

William received his heart and began his recovery. He had his two biggest champions by his side and an entire community rallying around him through CaringBridge.

“Using CaringBridge to talk about our journey and to post journal entries and pictures became very cathartic for us,” Betsy said. “It just made you feel like you had a sense of community, even though you didn’t have it right there staring you in the face.”

Now two years after his transplant, William is a thriving, tenacious toddler. “We do whatever we can to just always be happy,” said Katie. “If there’s one thing we’ve learned from all of this, it’s just—be happy. Do things that make you smile. Things that make your day better.”

Sharing it all on CaringBridge has helped William’s moms in many different ways.

“I think in the medical world, it’s really easy to forget that you also have things to celebrate,” said Katie. “We wanted [William’s page] to be a lot of positivity, sharing excitement and milestones and silly things. It can still be positive, and you can still be whatever family you always wanted to be, even if you’re in the hospital. There’s no right or wrong way to express what you feel.”