Grady James Tiffenback

On March 21, 2021 Grady James Tiffenback was born at 8:40am. Just like his big brother, he was born premature at 31 weeks gestation weighing only 3 pounds 9 ounces. Shortly after delivery, he was airlifted to Iowa City Stead Family Children’s Hospital. About a month prior, he was diagnosed in utero with a rare congenital heart defect called total anomalous pulmonary venous return (TAPVR) meaning his pulmonary veins were connected to the wrong place on his heart and prevented his blood from circulating properly. Doctors were unsure of the severity of this condition and what it would mean for Grady. In Iowa City the doctors not only confirmed the suspected heart defect, but also discovered it had a blockage that required immediate surgery.

That evening Grady was taken to the cath lab and had a stent placed in hopes this would keep him stable and he would be able to grow and get strong enough for open heart surgery to correct the location of his pulmonary veins. The next day it was discovered Grady had a minor brain bleed. Doctors believed this began before Grady was born and were hopeful it would begin to heal and resolve itself. The next two days were spent doing countless tests, monitoring his heart very closely, and trying to balance his underdeveloped lungs with the right amount of blood flow to pump oxygen throughout his entire body. His parents spent many hours researching and understanding his condition; trying to find answers while also trying to soak up as much time with him as possible uncertain of what his future may hold.

Other hospitals were contacted in hopes of finding a cardiology team with who had successfully treated this combined rare heart defect diagnosis, pulmonary hypertension, and prematurity. Finally, on day 3 another head ultrasound was done to check on the brain bleed, and it was discovered to have gotten much more severe. Grady’s tiny body had been through too much in such a short period of time and there was nothing left for the doctors to do to help him. During the time of COVID restrictions limiting hospital visitors, his family was blessed with having the opportunity for Grady’s older brother Gavin and grandparents to come meet him, a hello that was also goodbye.

That evening, after 84 hours earth side, Grady gained his angel wings on March 24 at 8:40pm.

Grady’s family had a lot of wonderful support in the days and weeks following Grady’s death, but also noticed gaps of need in their journey that weren’t being fulfilled through existing support systems. Some time after his passing, Grady’s mom reconnected with Kylie who had been Grady’s NICU nurse and shared her experience.

They talked extensively about areas of opportunity to support grieving families, which sparked ideas of creating an organization with the hopes of filling in those gaps based on their, and so many others’ experience.