When I found out I was expecting in 2015, I like other expecting moms was over the moon. I did all the prep work for baby number three and Gabriel was born in September of 2015. I was excited but quickly noticed a breathing issue while still in the hospital. I was assured he was healthy, and he was sent home at 5 days old. Each day at home his strider became louder and breathing more labored; I knew something was wrong and brought him to see his pediatrician at 8 days old and was told to call the ENT to schedule him – our family had a history of airway malacia’s. That day his condition worsened, and his body went limp at home and I rushed him to our local emergency room; minutes after entering Gabriel turned completely blue grey, a code blue was called, and we were swarmed by drs and nurses. Gabriel was in cardiogenic shock, and we entered the world of Congenital Heart Defects. He was stabilized and flown to the Children’s Hospital of Philadelphia, and we lived in the CICU while he was on life support. He was diagnosed with an extended critical coarctation of the aorta, hypoplastic aortic arch, and a small bicuspid aortic valve. The severity of his condition was unknown for his survival, but he fought and while he was unable to do a full repair, he had his first heart surgery, his team repaired the critical coa. After recovery he was able to go home, in the months following his heart surgery we had struggles with hypertension and he was brought back in for a cardiac catheterization, which showed narrowing, and an intervention was completed. We spent months in and out of the hospital and knew another repair would be required. An unexpected event occurred at 17 months old, Gabriel had his first drop attack, and we were sent in a whirlwind of figuring out why he was losing consciousness and left-sided strength. After many appointments, tests, research, and communication with a new friend online who experienced similar symptoms as I child, I sent his chart to Boston Children’s where he went in for another catheterization repair and was diagnosed with subclavian steal syndrome. Gabriel’s left subclavian artery had stenosed and closed; no blood was crossing from his heart to his left arm, so his body was compensating by pulling blood from his brain. After going home and speaking with his team at CHOP, it was decided an open-heart surgery was needed to repair his heart and reimplant the artery into his aorta. This surgery hadn’t been completed prior, but the team and CHOP and a vascular surgeon from the University of Penn assured me that this was the best plan and Boston Children’s agreed. On April 8, 2020, we went in while the world was shut down and repaired his heart creating a normal blood flow. In the following months we saw increased struggles and since has been admitted multiple times to clear blockages and places stents to keep his blood flowing in the correct direction. He will continue to move forward and as he grows will need more monitoring and repairs when needed.
Gabriel is currently in 4th grade and doing well right now! He has two older sisters, Gianna & Genevieve that he enjoys playing video games with. He loves traveling and has developed a passion for soccer; he loves playing the sport, as well as watching his favorite teams and players – especially his favorite team the Netherlands.
My passion for advocacy in the medical world grew immediately in finding Gabriel’s diagnoses and the need for support in this world was resounding. Standing in my child’s room in the CICU, surrounded by drs and nurses, yet feeling more alone than I ever have in life. I remember the first time I was introduced to a group of fellow heart moms while in the CI and I knew I needed to become part of the drive to create support for families and continued research to provide patients with the best outcomes. I have worked in advocacy for the last 9 years through organizations such as the Mended Heart, cycling in support of CHOPs research at the Philly Spin In, supporting Hayden’s House of Healing for bereaved families, as well as local non-profit Beats for Bella. When I learned of HeartWorks my interest grew immensely. The idea alone that we could repair a heart from the patient’s own cells was mind blowing. One Heart by HeartWorks grew from there to support families in the cardiac community and continue to support and grow this research. Connecting with families, providing necessary support, and letting them know simply that they are not alone on this journey.
