How a Dual Heart-Liver Transplant Saved Gracie’s Life

Gracie’s parents have always known their daughter would one day need a new heart, but they didn’t expect she would eventually be among the first 30+ pediatric patients nationwide to receive a dual heart-liver transplant.

Before the age of 5, Gracie had already been under the care of a whole team of Children’s Hospital Colorado experts and completed three important surgeries to address her single-ventricle heart disease. The condition left Gracie with only one functional chamber of her heart, causing strain on her whole body. These surgeries were critical in helping improve her heart’s function and in dealing with some of the lymphatic complications that accompanied her condition, but they weren’t curative.

Over time, the condition began impacting Gracie’s everyday life significantly, particularly affecting her breathing and increasing the time she spent receiving treatments.

“It got to the point where her quality of life was severely diminished,” says Gracie’s mom Whitney. “I always said in my head that as soon as her quality of life isn't good, then we're going to do something about it.”

Deciding on a dual transplant

As the family began preparing for a heart transplant, her doctors became more and more concerned about Gracie’s liver. In most kids with single-ventricle disease, the heart’s abnormalities cause strain on the liver and lead to some amount of damage. Typically, a heart transplant helps these patients improve enough that the liver can recover on its own. In Gracie’s case, previous surgeries impacted her liver so greatly that it would need to be replaced as well — and soon.

“It all kind of happened pretty quickly within a few months,” Whitney recalls. “We went from knowing there'd be a heart operation and then finding out that she was going to be the first one at Children’s Colorado to also have a liver too. It was a lot.”

Thankfully, Gracie’s care team had planned for this possibility. Two years earlier, the cardiology and hepatology teams at Children’s Colorado began considering and preparing for a surgery they had never completed before. In fact, only about 35 pediatric dual heart-liver surgeries had been performed across the entire country. That careful preparation saved Gracie’s life.  

The first step — even before organs became available — was to bring together every person responsible for completing the surgery and managing her care after. The family stayed in the inpatient unit, where Gracie had been receiving care, ensuring they’d be ready as soon as a heart and liver became available.

“They called in the middle of the night,” Whitney says. “Now that it was actually happening, I was feeling all the things at the same time. I've seen her go through surgeries before, and besides being uncomfortable, she could paint and walk and play and do Legos and I knew it was not going to be like that again for a while.”

Even so, the entire family had immense trust in the team, whose expertise had guided Gracie’s care since infancy.

An expertly coordinated surgery and recovery

On surgery day, the cardiothoracic team began with the heart procedure before the abdominal surgery team took over to complete the liver transplant. In all, the operation took about 17 hours. From there, Gracie remained in the hospital for recovery, where a team of specialists and nurses monitored both organs continuously.

“I don't think I've ever seen that many people in rounds before in my life. There were people on video chats calling in, and she had two nurses. I'd never seen anything like that,” Whitney says. “They thought through everything, and they talked through it step-by-step numerous times. So, it was neat to see it all come together.”

Within just a couple days, Gracie was able to stand for a few seconds, and it wasn’t long before she took her first walk around the hospital, with medical dogs Kit and Galaxy by her side. For a month, she recovered in the hospital, spending her days visiting our T(w)een Zone, playing Mario Kart with visitors and scoring special treats from her nurses.

Once, when she wasn’t well enough to participate in a hospital scavenger hunt, her care team brought the scavenger hunt to her.

Returning to a new normal

After staying at a nearby home for an additional two months of close monitoring and routine care, the family was able to return to their home in Fort Collins for the start of Gracie’s sixth grade year.

Today, not even a year after her transplant, she’s back to running, rollerblading, studying new languages and catching up with her friends.

“Mom's always like, ‘Are you nervous? Are you scared about this?’ I'm like, ‘No, it's fine,’” Gracie says. “Because complaining about it isn't going to make it go away. So, I just see the good in things. Like, I'm not in pain. I get to paint and eat snacks all day.”