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The gift of Grace

Grace O'Masta and her mother, Jenny. (Photo: Jim Bovin)

Back from the brink of death, Eagan girl thrives after heart transplant

Grace O’Masta has come a long way from the devastating day in spring 2008 when her parents were told their month-old daughter likely wouldn’t survive the night.

Born with an enlarged and weakened heart that wasn’t capable of pumping enough blood on its own, the Eagan girl was living at University of Minnesota Amplatz Children’s Hospital, hooked up to the Berlin Heart—a then-experimental ventricular assist device—and on the waiting list for a transplant.

Amplatz Children’s Hospital was one of 13 sites nationwide to participate in Berlin Heart clinical trials. The device, which gained approval from the U.S. Food and Drug Administration in late 2011, takes over the work of an ailing heart until the patient can get a transplant, or until the heart becomes strong enough to function again on its own.

While on the Berlin Heart, Grace had a stroke. “She was very, very sick,” says Rebecca Ameduri, M.D., one of Grace’s cardiologists.

Grace had lost about a third of her brain mass and was scratched from the transplant list. Family gathered to say goodbye, holding a prayer service as Grace was disconnected from the Berlin Heart.

“I was holding her and crying,” recalls her mom, Jenny O’Masta. “And I’d look up at the doctors, and they were all still watching her and looking at the monitors. And she’d open her eyes and look at me, and kind of snuggle into me. I was confused.”

Home and back again

To everyone’s surprise, Grace’s heart rate and blood pressure remained steady.

“That turned into two days, then three days, and then four,” O’Masta recalls. Still, expectations were low. “When we went home in July 2008, the understanding was, maybe she’ll live to 2. Her heart’s just not that strong.”

Grace’s health declined in the winter of 2011. A few months later, she went into cardiac arrest during a dental exam. Her parents and doctors managed to get the toddler back on the heart transplant list; meanwhile, Grace was reconnected to the Berlin Heart.

While her parents took turns caring for new baby Olivia with help from family, Grace began living at the hospital again. She quickly became a favorite among Amplatz staff, who marveled at her “amazing” developmental progress, Ameduri says.

“Nurses, doctors, she wanted to play with whomever came in the room,” O’Masta says. “We’d put her on the mat by the door so she could wave at people going by. She kind of developed a more outgoing personality.”

O’Masta attributes some of Grace’s resilience and growth to the outstanding care she received at Amplatz.

Astounding recovery

In the fall of 2012, Grace got a new heart. Under the lead of Amplatz Children’s Hospital heart surgeon Roosevelt Bryant III, M.D., the transplant was a tremendous success. “The typical patient goes home in 14 days; Grace went home in 10,” Ameduri says.

A transplanted heart has a life expectancy of about 18 years. “By the time Grace needs another transplant, hopefully [the process] will be even smarter and better,” Ameduri says.

Today life at home is blessedly normal for Grace: being in preschool with a visiting teacher, enjoying the family’s new dog, romping on the swing set, and playing (and fighting) with her sister.

Now 4 years old, Grace visits Amplatz three times weekly for occupational, physical, and speech therapy. Her recovery has been a revelation to all.

“She doesn’t hurt anymore,” O’Masta says. “She’s a different kid.”

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