The day Austin and I found out we were expecting our first little baby was one of the best days of our lives. Our minds were immediately filled with daydreams of what our future would like as a family of three - ski trips, playing in the ocean together, cheering on our child at sports games, family movie nights... We were ECSTATIC. At our 20 week ultrasound, we recieved the crushing news that our baby had a critical congenital heart defect, one that would require a massive open-heart surgery in the first week of life to ensure long-term survival. The diagnosis was DORV (with a subpulmonary VSD) and Transposition of the Great Arteries - the surgery was the arterial switch operation. The thought of our baby going through something so traumatic was devestating. But we shifted our mindset, spoke over our baby that he was a heart warrior, and we prepared ourselves for a difficult, but long, happy life together.
Cooper Charles was born on October 10th, 2023 and he was PERFECT. I had never believed in "love at first sight" until the moment Cooper was born. Austin and I were completely enamored and the proudest new parents. Our first week in the NICU was tough, but it ended with the most wonderful news - that Cooper would get to come home! His doctors decided that he was doing well enough that he could come home and grow a little before his surgery. So at one week old, Cooper left the hopsital for the first time, and we had the most magical four weeks at home together. We snuggled on the couch, watched basketball, went on long walks in the neighborhood, and we even went on a family adventure to the cabin. Cooper loved to be held, drink lots of milk, and he was a tummy-time expert.
On November 14th, at just 5 weeks old, our lives changed forever. The surgery that was supposed to fix Cooper's heart was unsuccessful. After a full day in the operating room, Cooper's medical team decided to put him on an artificial life machine (ECMO) that would function as his heart and lungs. The doctors could not come up with a reason why his heart did not respond to the surgery; the hope was that Cooper just needed a little time for his heart to recover, and then it would start working properly. After 6 horrible days, Cooper's heart was still not functioning and despite over a hundred blood transfusions, he was losing too much blood. On November 20th, we held our baby's little hand, kissed his perfect face, and cried as we said goodbye..
It's hard to come up with the right words to express how much we miss Cooper. We still love him so much and it hurts knowing that we will never be together again. Austin and I are determined to keep Cooper's memory alive and we are always finding new ways to do this. Participating in this walk is one way that we get to honor our brave little heart warrior, along with other heart warriors like him.
While Austin and I wish we didn't have to be a part of this community, we are so grateful it exists. The Children's Heart Foundation's mission is to advance the diagnosis, treatment, and prevention of congenital heart defects through groundbreaking research. 1 in 100 babies are born with a congenital heart defect (CHD), making it the most prevelant birth defect. 25% of babies born with a CHD are classified as critical (including our sweet Cooper). Only 69% of babies with critical CHDs make it to adulthood, a scary statistic, but thanks to advancing research, a significant jump from the 20% adult survival rate in the 1950s. Congenital heart defects are the leading cause of birth defect-related infant death, accounting for 4.2% of all neonatal deaths. The cause of congenital heart defects is still unknown and there is no cure. While research around surgeries and treatment has grown significantly, most children and adults with CHDs still face significant risks in their day-to-day lives.
Please consider joining us on the walk to raise awareness or please consider donating to our fundraiser page so we can support the mission to advance the research around congenital heart defects. If you would like to participate in the walk, please coordinate with us so we can help make it possible. Thank you for your generosity, and for standing beside Austin and me in supporting something that is so important to us. And thank you for remembering Cooper - he is our everything.
