ECMO Survivors: Baby Eleanor's Story

At Anne and Jeff Pando’s 20-week check-up, their unborn baby girl was diagnosed with a diaphragmatic hernia, which can occur when the diaphragm does not completely form, and a gap is created between the chest and the abdominal cavities. Organs can move through the gap in the diaphragm and put pressure on the lungs, impacting lung development and the baby’s ability to breathe after birth. They were devastated to hear that their baby would need surgery to repair her diaphragm and time to allow her lungs to grow. Looking for answers and the best care for their baby, the Pandos came to Lurie Children’s.

The Pandos were referred to The Chicago Institute Fetal Health. The program provides pre-birth counseling and pediatric care planning for women diagnosed as carrying babies with medical problems. Dr. Talbot worked with Anne and Jeff’s obstetrician at Prentice Women's Hospital, which is connected by a bridge to Lurie Children’s Neonatal Intensive Care Unit (NICU), to help create the best birth plan for the baby.

At Lurie Children’s, Dr. Talbot connected them with Marleta Reynolds, MD, the Chief of Pediatric Surgery, neonatologists Nicolas Porta, MD, and  Molly Ball, MD, and Linda Zekas, APN. Anne and Jeff regularly met with Nina Gotteiner, MD, for fetal echocardiograms. The Pandos also went on a tour of the NICU to see where their baby would be treated after birth. Together, the team of specialists developed a plan for the baby’s care.

Anne gave birth to Baby Eleanor on December 24, 2012. After Eleanor was stabilized at Prentice, she was brought to Lurie Children’s NICU via the pedestrian bridge. She underwent her first surgery for her diaphragmatic hernia when she was one week old. Following the surgery, her lungs were still weak, and she wasn’t responding well enough to ventilation and the medications she was on, so Dr. Reynolds recommended they put Eleanor on extracorporeal membrane oxygenation (ECMO). ECMO is a life-support machine for patients with severe lung or heart issues. An artificial heart and lung machine temporarily takes over to supply blood to the child’s body. Dr. Reynolds had explained ECMO in the family’s earlier meetings with her. “We knew that it was a last resort, and if Eleanor needed it, the situation was very serious,” Anne says. 

Eleanor’s condition improved very quickly while she was on ECMO. She had to be taken off emergently after one week due to complications. Anne remembers, “While Jeff and I were scared, she was just fine because the ECMO machine gave her heart and lungs the rest they needed.” After coming off ECMO, Eleanor was in the hospital for just over two months to give her lungs time to grow and so that she could continue to get stronger.

Though the Pandos were happy Eleanor was improving, they were still subject to the stresses of having a child in the hospital. “The whole staff was so great during such a hard time for us. They kept us in the loop about what treatments were happening and how our baby was doing, and they took care of us, too. As parents, you’re always stressed out and you always have questions, and they took time to answer those questions and make sure we were okay,” Anne remembers. “Her primary care nurse, Jeana Kerzman, even called the NICU on her day off to check on Eleanor after a particularly difficult day on ECMO. We wouldn’t have gotten that level of attention anywhere else.”

In March 2013, Eleanor was released from the hospital with NG feeding tubes, which she kept until she was nine months old. Since then, she’s had another surgery to repair her hernia and several follow-up appointments with doctors from almost every specialty in the hospital, though Eleanor no longer needs to see all the specialists. In fact, she has progressed so much that she only sees Dr. Reynolds on an annual basis. We’re happy to report that Eleanor has reached all of her developmental milestones and is all-around healthy.

Looking at Eleanor today, you would have no idea what she’s been through. She is a happy and active 2.5-year-old, constantly on the move, running and jumping — the way a kid should be.