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. But she had difficulty keeping food down and was slow to gain weight.
When Jaime and Sean noticed Greta’s heart was racing and she seemed pale and lethargic on day in June 2020, they took her to their local emergency department. Doctors were shocked to find Greta’s heartrate was in the 300s, and decided to rush her to Lurie Children’s.
Greta was quickly admitted to the Regenstein Cardiac Care Unit (CCU), 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), or mechanical pumps to support heart function and blood flow in patients with end stage heart failure.
After the VAD procedures, Greta was put on the waitlist for a new heart. A team of specialists kept her healthy and strong with various therapies and excellent nursing to keep her in great condition for the transplant. Family, friends and community members rallied for Greta, Liam, Jaime and Sean with #GretaStrong T-shirts, special mail and fundraisers. Due to COVID-19 and visitor restrictions at the hospital, the family had to celebrate holidays and birthdays from a distance.
On January 6, after nearly seven months of waiting, the call arrived: A heart had been accepted for Greta.
“We were just overcome with emotion that day,” Jaime said. “Even now, it’s hard to find the words to express how grateful we are to the family who made a choice in their time of loss to give our daughter life.”
Jaime and Sean packed their bags to stay at the hospital, while Jaime’s sister flew in from California to stay with Liam. Sean’s colleagues at the Cook County Sheriff’s Office escorted the new heart to Lurie Children’s. When Jaime and Sean watched the police escort with lights and sirens signaling the arrival of Greta’s heart that night, “it was such a special moment,” she said.
From the operating room, the transplant team called Jaime and Sean with updates, including the placement of the first stitch in Greta’s new heart. Post-surgery, Greta made a speedy recovery, a testament to the excellent care she received to keep her healthy during her wait.
After 225 days in the hospital, Greta returned home with her parents and big brother – dancing, giggling and talking. She returns to Lurie Children’s for check-up appointments with her cardiology team.
“She is a different kid than when she arrived,” Jaime said. “The wait was long, but she was in such a great place. Everyone at Lurie Children’s loved her as if she was their own and supported our whole family. We are so thankful to be on the other side of this now. For every kid on the CCU, we hope for the same happy ending.”
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.