On Oct. 27, 2010, Nora delivered her third child, a baby girl named Regan. Prior to her birth, Regan was diagnosed with dilated cardiomyopathy, a congenital heart condition she also shares with her father T.J. and oldest sister Reese.
For the first five months, Regan progressed just as any healthy baby should. As the family prepared for Easter weekend, however, Regan’s appetite began to diminish and her fussiness increased.
“I thought I was taking Regan in for something routine and never imagined that her heart was beginning to fail,” said Nora.
The family was devastated to find out that Regan was in heart failure, especially since her sister and father were living healthy lives with the same condition. Soon after, Regan’s parents met with cardiologists at University of Minnesota Masonic Children’s Hospital to learn more about the Berlin Heart® EXCOR—a life-saving ventricular assist device used to bridge pediatric patients for transplant.
On May 4, 2011, 6-month-old Regan underwent surgery to place the Berlin Heart. Former M Health Pediatric Cardiothoracic Surgeon James St. Louis, MD, was pleased with the surgery and noted that Regan was the second youngest patient to receive a Berlin Heart. As the days progressed, Regan continued to make significant improvements.
Nora was extremely pleased with the level of care and attention her daughter Regan received during their 71-day hospital stay. Nora noted that the doctors and nurses took the time to answer questions. “I felt good about the plan and actively involved in Regan’s day-to-day care.”
After being on the Berlin Heart for seven weeks, Regan received her heart or “angel heart,” as her mother Nora calls it. She was able to go home to be with her family thirteen days after her transplant.
After the transplant, Nora was concerned about coordinating follow-up care for Regan. But Pediatric Cardiologist Rebecca Ameduri, MD, and the medical team have made it easy. Regan and her family were at the center of a comprehensive care plan that included regular communications and quick answers when they had questions. They even received medications delivered right to their door. The entire family was always included in discussion about Regan’s care, even her sisters. This was especially important for Reese, who has the same condition and is now under Ameduri’s care, too.
The wonderful care they receive from the hospital team puts them at ease. So, they can worry about more important things—like keeping up with Regan.