CDH Charity, CDH Survivor, CDH Scholarship

“Looking back, I know now that there simply isn’t enough awareness and knowledge of this birth defect”

Alice Kresh

In June of 2016, Alice gave birth to Talon during a massive thunderstorm, knocking out the power to the hospital during the most tenuous of moments - the chaos that ensued that night was a harbinger of the first few months of Talon’s life. Fight, recover, fight, recover, repeat. Talon was born with CDH, coarctation of the aorta, as well as numerous other defects. He spent about 110 days in the NICU undergoing multiple life saving surgeries - CDH repair at 10 days old and open heart surgery at 28 days. As a parent, watching your innocent infant fight for their life stands as one of the greatest tests of patience, tolerance, and trust - at times darkness tries to overtake the light. During times where sadness or exhaustion would start to creep in, Alice summoned the strength she needed from Talon and the wonderful souls that comprised his medical team and helped him claw his way into this world.

After the dust had settled and upon some personal reflection on their experience with Talon’s care team, Alice decided on a dramatic career change. In order to best help other families with critically ill children she left her role in non-profit consulting and is in the process of becoming a registered respiratory therapist. Her personal experience as the mother of a patient will offer a unique and powerful perspective for generations of future families. As if that alone wasn’t noble enough, she also now works part time at the local Ronald McDonald House helping families of critically ill children find some form of comfort, normalcy, and peace while they begin their own fight. She and her husband have also taken roles on prominent NICU panels to help educate parents on how to best cope with an extended NICU stay.

In the long run, Alice’s calling is to use her personal story to influence the pulmonary community to be a bigger advocate for CDH and to push research and awareness on a more national level within the respiratory societies. We are so proud of Alice and her very noble calling and are so happy to call her one of our scholarship recipients for 2019!


Research Funding


Angels in the NICU