ECMO Survivors: Madeline's Story

Madeline Nielsen was born in August 1993 via C-section. At birth, Madeline was not very responsive, and when the doctors and nurses couldn’t get Madeline to cry, she was rushed to the nursery for critical care. Sigurd, Madeline’s father, observed the team of doctors and nurses as they tried to get Madeline to cry. Madeline’s condition clearly perplexed the doctors, and they were unable to determine the extent of her problems. For the first few hours of Madeline’s life, her father rushed back and forth between the nursery and the delivery room where Rita, Madeline’s mom, was being treated. Because Madeline’s medical condition was too dire for the equipment they had on hand, a determination was made to transport her to Children’s Memorial Hospital, now known as Ann & Robert H. Lurie Children’s Hospital of Chicago.

Once she arrived at Children’s Memorial, the specialists determined Madeline was a candidate for extracorporeal membrane oxygenation (ECMO). ECMO is a life-support machine for patients with severe lung or heart issues. It is a form of cardiopulmonary bypass in which an artificial heart and lung machine temporarily takes over to supply blood to the child’s body. She was quickly put on ECMO – the doctors told Mr. Nielsen that if they waited any longer, it may be too late.

Meanwhile, Rita was still recovering from delivery at a hospital in the suburbs. Throughout those first few days, Mr. Nielsen shuttled back and forth between hospitals to visit his wife and newborn daughter. He took Polaroids of little Madeline at Children’s Memorial. It was the first time Rita really had a chance to look at Madeline and observe her in the Neonatal Intensive Care Unit (NICU). A few days later, Rita was released and able to travel to Children’s Memorial. Immediately upon her arrival at Madeline’s beside, the nurses calmly spoke with Rita and carefully explained all the lines and equipment that were keeping Madeline alive. They truly gave Rita a sense of comfort. Throughout Madeline’s time on ECMO, the nursing staff and the team in the Division of General Pediatric Surgery helped the Nielsens hold on to hope.

Six days later, the Nielsens received the good news that Madeline was ready to come off ECMO. Madeline sailed through her recovery. Luckily Madeline has almost no side effects from her time on ECMO. Today Madeline is a healthy 22-year-old.

The Nielsens enjoy returning to the hospital for the annual ECMO Reunion. “It’s important to us to visit and thank the ECMO team for the second chance at life they gave Madeline,” says Rita. “We also like to talk to parents with children currently on ECMO who sometimes attend the reunion. It gives them the chance to see what’s possible not just a few years out, but that their child can grow to be a happy and healthy adult. It’s a little glimmer of hope in their darkest moments, just like we had.”