Meet Eleanor

Congenital Diaphragmatic Hernia, CDH, ECMO, CDH Support, Charity Golf
Congenital Diaphragmatic Hernia, CDH, ECMO, CDH Support, Charity Golf
Congenital Diaphragmatic Hernia, CDH, ECMO, CDH Support, Charity Golf

eleanor’s Story

Hurricanes are notoriously unpredictable, criss-crossing both land and sea seemingly on an hourly whim, equally temperamental and relentless. But for all their unpredictability and regardless of direction, they always march onward and more often than not bowl over anything in their path. Perhaps it fitting then that as Baby Eleanor was about to enter this world via St. Petersburg, Florida her mother watched in earnest from her hospital bed as Hurricane Hermine raked over the Florida Gulf Coast. A harbinger of things to come apparently, for since she was born Eleanor has been her own personal hurricane - the “Hoosier State Hurricane” – facing countless and seemingly insurmountable impasses, she's overcome each and every one of them in her determination to make her mark on this world.

Eleanor was born September 1, 2016 at Johns Hopkins All Children’s Hospital, her parents having relocated the family to be under the care of Dr. David Kays and his team. Scrappy from the start, Eleanor was born with only 30% normal lung capacity with her entire intestinal tract and 60% of her liver in her chest cavity. Her repair surgery was performed four days later, and after being extubated at 13 days Mom was finally able to hold her for the first time at 17 days old. However, true to her unpredictable nature, it was discovered at six weeks old that she suffered from Pyloric Stenosis – a common side effect of CDH that prevents healthy digestion – and she was back in the OR for another surgery. At last, after two months Eleanor decided she was over Florida, and the entire family bid a fond farewell and headed home to Indy.

Now ten months old Eleanor is on the march again, literally this go around as she is crawling all over their house. She’s able to say “Momma” and “Dada”, and wears that perpetual and perfect smile on her face wherever she goes. Her journey and recovery are far from over, and regular visits back to St. Pete will be a part of her development for years to come. As such we’re honored to provide the family a Fore Hadley Angels in the NICU grant to assist in her ongoing growth, health, and development. Get out and see that wide world Eleanor, we’re all just fortunate to be witnesses!

To follow Eleanor’s journey visit -

About the Fore Hadley Angels in the NICU Fund

Support and proceeds for the Fore Hadley Angels in the NICU Fund will go towards assisting current and future families like Eleanor’s, by providing financial contributions to assist families with the costs associated with extended, long distance travel and living arrangements. Costs that are often a must to ensure the proper specialty care for CDH babies.