Kaylen’s Fight was created to honor our daughter, Kaylen, who passed away in 2018 from hydrops fetalis.
We were ecstatic to find out we were finally pregnant (with twins!) after several failed rounds of IVF. We knew there would be inherent risks due to the simple fact that there were two babies growing at the same time. However, we were not nearly prepared for the roller coaster ride that we were about to embark on.
We had an extremely difficult pregnancy from the beginning and got the worst news possible at 25 weeks. What started as a “simple heart problem” had turned into the diagnosis of hydrops fetalis, which is essentially a form of fetal congestive heart failure. We were told by our specialists that the outcome would be very poor and Kaylen most likely would pass away before we could even make it to delivery. It was even more complicated because our other daughter, Kamdyn, was healthy and any interventions to try and help Kaylen would ultimately put Kamdyn at risk. We tried to keep our faith and hoped for a miracle every week as we went in for close monitoring. At 30 weeks and 4 days, Kaylen was still fighting but Callie and Kamdyn had started experiencing a lot of complications and an emergency c-section was performed. Kaylen fought with all her might for 9 long days before succumbing to her ailments. Kamdyn went on to spend 63 days total in the NICU and came home 4 days before her original due date.
Those three months were the most difficult times in our life. Going through a high-risk pregnancy, infant loss, prematurity, and a prolonged NICU stay was more than we ever believed we could manage. But somehow, with the help and support of our family and friends, the wonderful team at UTSW NICU, and a whole lot of tears – we survived.
We want to take from our experience and use the Fight to help other families who may find themselves in the same unfortunate situation we were in.