Making a Difference Awards Honor Heroes Among Us
The Patient Advisory Council divulged the secret identities of 160 real-life heroes who perform superhuman acts every day without the gifts of X-ray vision or astonishing physical strength. Instead, sheer determination and compassion topped the list of extraordinary abilities celebrated at the Making a Difference Awards, on April 13, in the Sabin Auditorium. The award recognizes staff, patients and families who display compassion, courage, comfort and support to those whose lives they touch.
Among the distinguished honorees, two nominees stood out for their devotion to supporting families from diagnosis through treatment. Amy Delgado accepted the 2016 Patient / Family Award, and Nicolas Madsen, MD, MPH, assistant professor, Heart Institute, received the 2016 Staff Award.
Amy Delgado creates hacks to neutralize disabilities
Delgado has come to the rescue for many families caring for a child with special needs through her advocacy and partnership with the medical team to rethink the standards of care. Her daughter Lily has spina bifida.
Once Lily was born, Delgado applied her can-do spirit and got creative, using inexpensive and everyday materials to give her daughter the tools she needs to thrive. Often these tools didn’t exist or were expensive. Delgado transformed Lily’s walker to accommodate all terrains. She adapted shoe laces with magnetic closures to overcome fine motor challenges.
Delgado shares her creations and ideas for encouraging independence and accessibility through her blog, Ability Hacker. She explains, “A ‘good hack’ is slang for a clever solution to a problem, and ‘hacking’ is the act of creating that solution. I call myself an ability hacker because I strive to create solutions that encourage my daughter to grow stronger and build new skills.”
Parents can also find tips on how to help a child handle big medical tests, how to navigate systems like education and government programs, and how to communicate with caregivers about a child’s special needs—all things she’s learned on her journey. Delgado even developed a book with visuals to help daycare providers understand Lily’s mobility aides, intermittent catheterizations and the signs that indicate an urgent medical concern.
“Even though we had some of the best care around us here in Cincinnati, it was still challenging, and there was still so much to learn,” said Delgado. “One of the things I really want to do for people is to share what I learned and make it easier for other parents and families of kids with spina bifida and similar types of needs.”
Delgado is a member of the board for the Spina Bifida Coalition of Cincinnati and chairs the Program Committee. She also educates others on the patient and family experience, offering her perspective at international conferences and multidisciplinary retreats for our Center for Spina Bifida.
“Amy has pushed her daughter toward independence, advocates beautifully for her rights, and works to increase awareness in the community and medical field. She works tirelessly to ensure that those surrounding her daughter are given the tools needed to understand her condition and the ways in which her daughter may need to have adaptations for inclusion,” says Jason Woodward, MD. “Her creative and inquisitive nature has led to tremendous supports for both caregivers and the medical team.”
Nicolas Madsen puts his heart on the line
Madsen first met Tiffany and Keith Messer in 2014. Their son Benjamin’s echocardiogram revealed that he had a congenital heart defect. Madsen explained complex medical terms in an understandable way and listened to their concerns late into the evening. He gave them his phone number and email and encouraged them to contact him with questions. He checked in often, even making a point to surprise Benjamin on his birthday with a hospital visit.
“Benjamin’s short year of life was a difficult one full of hard questions and tough decisions. Dr. Madsen walked this journey with us,” said Tiffany, who nominated Madsen for the award.
When it was time to say goodbye to “Super Ben,” Madsen was there too. He comforted and embraced the family when it became clear that every effort had been made to try to resuscitate and save their son.
“He continues to embrace our families and understand the tremendous lessons we can all learn through continued partnership and respect,” said Brianne Reedy, RN, registered nurse, Heart Institute.
Madsen was unable to attend the award ceremony, but the Messer family accepted the award on his behalf. Tiffany explained that the “best become the best by putting their heart on the line and letting little ones take a piece of it with them when they go.” Madsen is one of the best.
Madsen joined Cincinnati Children’s in July 2012. He graduated from the University of California at Davis and earned his medical degree with honors from the University of Washington. He completed his residency and fellowship at Seattle Children’s Hospital. In 2011, Madsen earned a Master of Public Health from the University of Washington. His research focuses on the prevention of cardiac disease by aiming to understand the implications of traditional risk factors, such as obesity, hypertension and a sedentary lifestyle, on those with congenital heart disease.
