Florissant Girl Beats All Odds of Survival; Throws Out First Pitch at Busch Stadium

By Nichole Richardson

Eleni Scott, of Florissant, is getting ready to celebrate her fifth birthday on Aug. 26—a birthday she was never supposed to see, according to the grim medical statistics. Scott was diagnosed at eight months old with a fatal and extremely rare developmental disorder called alveolar capillary dysplasia with misalignment of pulmonary veins (ACD/MPV).

The devastating condition affects the development of the lungs and their blood vessels by impeding the exchange of oxygen and carbon dioxide. Without a lung transplant, infants have not been known to survive past one year and most affected do not live longer than a few hours to a few weeks.

Baby Eleni was a modern day miracle to withstand eight months before her diagnosis and the now-youth is still spinning miracles such as throwing out the first pitch July 16 at the 2016 Transplant Day at the Ballpark at Busch Stadium. Scott walked hand-in-hand with Fredbird for a touching photo op before she met her doctor, Stuart Sweet, pulmonologist and lung transplant program director at St. Louis Children’s Hospital, on the pitching mound.

“She was so excited that she told everyone, including the drive-thru attendant at McDonald’s that morning,” said her mother, and Hazelwood Central Early Education teacher, Karen Scott.

The excitement doesn’t stop there though—Eleni just started regular public preschool Aug. 10 at Hazelwood’s Early Childhood Education Center, which is exactly what her doctors prescribed. “At first they thought she would have to be home-schooled but she has done so well that the doctors want her to live as normal a life as possible, and that includes school,” said her mother.

Considering the traumatic start little Eleni’s life took, normalcy is beyond a welcome feeling for the Scotts. Baby Eleni actually had a perfectly routine birth and delivery at Missouri Baptist Medical Center and appeared healthy until she turned three months old.

She went in for an average cold and had to be given oxygen, which she continued on for half a year until being diagnosed with ACD/MPV and being placed on an extra corporeal membraneous oxygenation machine (ECMO).

The machine is for kids with severe heart and lung failure and uses a pump and oxygenator to deliver oxygen to vital organs. Once stabilized, Eleni switched to the Maquet Quadrox-iD Pediatric Oxygenator to “bridge” to a lung transplant.

“She was only on the Quad machine four days and then had her double lung transplant at nine months old. She was only the second one in the world to use the Quad back then,” explained her father, Nicholas Scott, a third-grade teacher at McNair in Hazelwood.

Though the doctors are thrilled and shocked by the little girl’s progress, Eleni’s family and her team of specialists she visits every three months, know that it is a very fluid situation. “She is doing extremely well and was four years post-transplant in June,” said Mrs. Scott.

“But we know the transplant is kind of like a Band-Aid. A lot of people mistakenly think you are cured once you have one but it presents its own set of problems and complications. Statistics show only fifty percent of patients make it to the five-year mark so it’s still a wait-and-see game really.”

The Scotts’ optimism and down-to-earth attitude are something to marvel. The close-knit family uses their strength and humor to get through. “Her brother, Niko, is incredible. They are very close and have a very special bond. They still fight like brothers and sisters do though-if they didn’t, then I’d have to worry,” Karen laughs. And of course, a night at the ballpark never hurts either.

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