A Healthy Heart for Baby Kaysen

Courageous Kaysen

Kaysen VandeWerken was born July 26, 2013, at Silver Cross Hospital in Joliet, a partner hospital of Lurie Children’s. “Kaysen appeared perfectly healthy, but within minutes of her birth, the doctors told us there was something wrong with her heart,” says Megan VandeWerken, Kaysen’s mother. “I had barely held her when she was transported to Lurie Children’s, where a team of specialists were waiting for her.”

That team of specialists included Elfriede Pahl, MD, the medical director of the Heart Transplant Program. “Kaysen’s electrocardiogram, her blood enzymes, everything suggested that she had a very severe insult to her heart, similar to an adult having a heart attack,” said Pahl. “It’s something you rarely see in a newborn.” 

Twelve hours later, a second crisis struck: Kaysen’s heart stopped completely. The Cardiac Rapid Response team resuscitated her and placed her on ECMO, a life support system, within minutes. The family was then given the difficult news that she would need a heart transplant to survive.

“I would stand next to her bedside and just talk to her and tell her that it was going to be ok and that this is what we needed to do. It would get better and I would make sure that it did,” said Kaysen’s dad, Stephen.  

“Kaysen was in the Regenstein Cardiac Care Unit (CCU), which offers a high level of treatment that is only available in a few children’s hospitals around the country,” said John Costello, MD, Medical Director of the CCU. The CCU also cares for patients from admittance to discharge, making sure care is coordinated across all steps of a patient’s treatment.

After waiting five weeks and one day, Kaysen received her new heart. Carl Backer, MD, division head of Cardiovascular Surgery, performed the transplant. “We were very confident that Kaysen would do well,” said Backer, who also serves as surgical director of the Heart Transplant Program. “Everyone in the OR commented on how well the transplant was going. She recovered much quicker than we thought she would.”

And just two weeks after her transplant, Kaysen went home to her brother and sister, and a community of friends and family who welcomed her home for the first time.

Today, Kaysen is a happy and healthy little girl. The pictures below show Kaysen in January 2015, just a year and a half after her time at the hospital.

 
Photo: Kaysen with her parents in January 2015.
 

​Courageous Baby Kaysen

Watch the video below to learn more about Kaysen's journey.