A Lake area couple is celebrating their golden anniversary by looking to pay their blessings forward. In summer 2012, Jim and Elaine Scott's 10-month-old granddaughter Eleni successfully underwent a groundbreaking procedure at St. Louis Children's Hospital to extend her life until she was able to receive a double lung transplant. Now, more than three years later, Ellie is doing “miraculously”, according to Elaine, and enjoys swimming in the Lake of the Ozarks on summer trips to her grandparents' home in the Gravois Mills area.
A Lake area couple is celebrating their golden anniversary by looking to pay their blessings forward. In summer 2012, Jim and Elaine Scott’s 10-month-old granddaughter Eleni successfully underwent a groundbreaking procedure at St. Louis Children’s Hospital to extend her life until she was able to receive a double lung transplant. Now, more than three years later, Ellie is doing “miraculously”, according to Elaine, and enjoys swimming in the Lake of the Ozarks on summer trips to her grandparents’ home in the Gravois Mills area. Receiving lots of support in their difficult time, the Scott family wants to help others in similar circumstances. After two years working to get a not-for-profit officially set up, Ellie’s parents Nick and Karen Scott - teachers from Florissant, Mo. - have started Eleni’s Lung Foundation (ELF) with the mission to provide support to families of children with illnesses as well as the doctors and nurses who care for them. “During her nearly 7 months in the hospital so many others saw to it that they got a hot meal, gas money to go back and forth to take care of their older son and home to take a shower that they want to ‘give back’ now,” said Elaine. With Jim and Elaine celebrating their 50th anniversary Feb. 13, they have been asked what they are going to do to celebrate. While they have private plans to mark the occasion, the couple is also asking friends to support the new foundation. “To our friends who want to ‘do’ something for us we have requested they ‘please’ consider making a donation to Eleni’s Lung Foundation to help them help others; or to a charity of your choice in honor of our 50th anniversary,” Jim and Elaine wrote in an email to Lake Media. “Thank you for your prayers.” Anyone interested in adding their support can make checks payable to Eleni’s Lung Foundation and mail to 885 Lilac Drive, Florissant, MO 63031. Ellie Scott was born Aug. 26, 2011. Appearing healthy at birth, she later became sick and was admitted to a hospital exactly three months later. It would be the first of many times in the hospital for Ellie. Testing showed that Ellie had pulmonary hypertension, and she was put on oxygen and medication. She would be hospitalized three other times for respiratory distress, Influenza A and a seizure and bacterial infection. Multiple chest X-rays, blood tests, ECO's, sweat test, swallow study, upper GI, two chest CT scans, a scope, EKG's and a spinal tap were done to try to figure out what was wrong. Referred to St. Louis Children’s Hospital, a biopsy at approximately nine months of age resulted in 12 pulmonary hypertensive crises, and Ellie miraculously survived almost coding three times. The biopsy revealed that Ellie had alveolar capillary dysplasia with misalignment of pulmonary veins (ACD/MPV), believed in some cases to be a genetic disease. There is no known cure for ACD/MPV, which affects the development of the lungs and their blood vessels. Ellie needed new lungs. An extremely rare disease, the Breath of Life Project estimates that the incident rate is around 1 in 100,000. According to to the National Institutes of Health, only 200 documented cases have been reported worldwide. Five days after the biopsy, Ellie was placed on full mechanical life support, called extracorporeal membraneous oxygenation (ECMO). This machine uses a pump and oxygenator to deliver oxygen to vital organs. It is used for children with severe heart and lung failure. While Ellie was placed on the lung transplant list for what needed to be a near perfect double lung match, but the ECMO was only a temporary solution as extended use past a week or two can permanently damage organs. With time running out for Ellie, her surgical team decided to take a new approach to try to bridge the time between the ECMO and the hoped-for lung transplant. On June 7, 2012, they placed her on a Maquet Quadrox-iD Pediatric Oxygenator in a configuration that did not require a pump, allowing the device to serve as an artificial lung, according to the article, "New Medical Approach Helps Baby with Rare Disease," published by the hospital on Ellie's case. A similar apparatus, called a Novalung, had been implanted in a two year old for the first time by doctors at this hospital in 2010. An experimental lung assist device, Quadrox differs from a Novalung in that it is small enough to fit a tiny newborn. Ellie was one of the first children to be placed on this device. At that point, doctors gave her a 50 percent chance of making it to a transplant. And then, according to the Breath of Life Project, there were only two known survivors of ACD/MPV and double lung transplant. Fortunately for the Scotts, St. Louis Children's Hospital is a world leader in pediatric lung transplants and has performed almost 400 lung and heart-lung transplants. On June 12, Ellie and her family got their miracle. She received new lungs that will prolong her life. "Ellie has been so phenomenally strong and shown the medical professionals such determination and strength, beating the odds and setting the bar at a new high," said Elaine at the time. "She truly has changed lives and brought us to our knees and bonded us together." On July 29, 2012, Ellie came home. "We are all so thankful because when it is all said and done we have Ellie and truly she has taught us that life is precious each day so we will slow down and cherish each day and one another more," Elaine said.