Born With Extremely Rare Heart Disease, Greta Finds Strength at Lurie Children’s

September 09, 2020

Jaime, Sean and their son Liam were ecstatic to welcome a baby girl into their family in April 2019. When she was born at 28 weeks, the family learned that little Greta had a form of heart disease known as cardiomyopathy that makes it harder for the heart to pump blood throughout the body.

“We were shocked,” says Greta’s mom, Jaime. “No one else in our family has a history of heart disease. My husband, son and myself have not had any heart health issues.”

Greta stayed in the neonatal intensive care unit (NICU) at the family’s local hospital months while doctors monitored her heart and lungs. After 4.5 months, Greta went home for the first time, where she thrived. Still, she was slow to gain weight because she often could not keep food down, a problem that a gastroenterologist attributed to acid reflux.

With concern, Jaime noticed her daughter’s heart would race every time she vomited. Under the guidance of a registered dietitian, Jaime and her husband Sean tried feeding Greta different formulas, but the vomiting and rapid heartrate continued.

One day in June 2020, Greta’s parents noticed she seemed pale and lethargic. After putting her to bed, Jaime checked on her in the night and noticed that her heart was racing and had an irregular beat. In the morning, she seemed more energetic, but when she went pale again that afternoon, her parents took her to their local emergency department.

“Your sister has a broken heart”

Greta’s heartrate was in the 300s, much to the shock of the emergency department staff at her local hospital. “Right away, they started moving really fast and tried to shock her heart back into a normal rhythm. They told us they were going to have to transfer her to another hospital. That’s when I said, ‘We’re going to Lurie Children’s, aren’t we?’”

Greta was admitted to the Regenstein Cardiac Care Unit at Lurie Children’s, where a team of experts diagnosed her with an extremely rare form of heart disease known as histiocytoid cardiomyopathy. She would need a heart transplant, and to keep her healthy and strong while she waited for a heart, they would have to implant two ventricular assist devices (VADs).

“It was super terrifying,” Jaime says. “Within 24 hours of the diagnosis, Greta was in surgery.” Jaime’s sister flew in from California to stay with Greta’s older brother, Liam, telling him, “Your sister has a broken heart and needs a new one.”

With two open-heart surgeries, Greta received one VAD on each ventricle of her heart, helping to pump the blood from the lower chambers of her heart to the rest of her body. After surgery, she was listed for a new heart.

Staying #GretaStrong

Post-surgery, Greta made a strong recovery, and “from there, things got better,” Jaime says. “She really perked up and we could tell she was more comfortable. Now, she smiles at everyone when they come into her room.”

With a team of specialists keeping Greta healthy and strong while she waits for a heart, the rest of her family follows her example. “At first, we were all so scared. After a while, we realized how important it is for us to take care of ourselves so we can be here for Greta every step of the way.”

In their hometown of Wheaton, IL, people continue to rally for Greta and her family. “Our support system is unwavering,” Jaime says. “They’ve made ‘#Greta Strong’ T-shirts, had bake sales and lemonade stands, sent us mail and started fundraisers. Everything they have done has really carried us through.”

At Lurie Children’s, Greta’s family takes comfort in knowing she is cared for by a team of experts. “I love that every child here has a team, and they are always ready to listen to our perspective as parents. Her whole team loves her and is excited to see her in a good place,” Jaime says.

About Regenstein Cardiac Care Unit

Lurie Children’s Regenstein Cardiac Care Unit (CCU) is a state-of-the-art 44-bed unit devoted to the care of young patients with cardiac disease. The Regenstein CCU is one of the few cardiac units of its kind in the nation, allowing each child to stay in the same private room from admission to discharge. The high-tech rooms adapt to the level of care the patient needs, and eliminates the need to transfer the patient to other units in the hospital. Our rooms are technologically equipped for intensive care while providing the family amenities of a regular acute care patient room. Cardiac patients have the same healthcare team throughout their hospital stay.

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